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Cancer Services Audit 1996 & 2001Colorectal

“Can

cer p

atien

tsus

edto

be surrounded by despair but thanks to better treatments . . . .

. . . . we are surrounded by hope.”

Cancer Services Audit 1996 & 2001COLORECTAL

Edited by: Heather Kinnear, Anna Gavin and Lisa Ranaghan

This report should be cited as; Kinnear H, Gavin A, Ranaghan L, 2005. Cancer Services Audit 1996 & 2001, Colorectal.

N. Ireland Cancer Registryavailable at www.qub.ac.uk/nicr/racc.htm


CONTENTS

Foreword I

Acknowledgements II

Patient Stories III

Introduction, Background and Methods 1

Results 6

Summary 37

Conclusion, Key Issues and Recommendations 43

References 44

Appendices 45A Campbell Report: Recommendations regarding Cancer Services in Northern Ireland

B NHS Improving Outcomes in Colorectal Cancer (recommendations in specific topic areas)

C Guidelines for the Management of Colorectal Cancer (summary)

D Staging of Colorectal Cancer



FOREWORD

Cancer services in Northern Ireland have improved in recent years. Developments

have spanned prevention, early detection and screening, diagnosis, management

and palliative care. The N. Ireland Cancer Registry has played an important role and

made a vital contribution in monitoring this progress.

Since 1996, we have seen the establishment of five Cancer Units at Altnagelvin, Antrim,

Belfast City, Craigavon, and Ulster hospitals and a regional Cancer Centre at the Belfast City

Hospital working closely with the Royal Group of Hospitals. The Cancer Units are now the

main focus for the delivery of services for people with the more common cancers. In

addition, some services for other less common cancers are provided from Cancer Units, in

conjunction with the Cancer Centre, on a shared care basis. These organisational changes

have already made an impact on care.

This report on colorectal cancer is very welcome. It is the fifth in a series which examines in

detail the pathways of care for patients with cancer here. The reports provide a fascinating

insight into how care has changed over the period. They will also facilitate the ongoing work

of improving services and patient care.

This work marks a significant step in the evaluation of cancer care and confirms the great

value of the Registry as a public health tool. I look forward to future reports in this series

and regular five yearly snapshots of the changing process of cancer care.

Dr Henrietta CampbellChief Medical Officer

I


ACKNOWLEDGEMENTS

The N. Ireland Cancer Registry is funded by the Department of Health, Social Services & Public Safety NorthernIreland (DHSSPSNI).

The work of this project would not have been possible without the additional funding received from the varioussources outlined below:

• Department of Health, Social Services & Public Safety (DHSSPS)

• Eastern Health and Social Services Board

• Northern Health and Social Services Board

• Regional Medical Audit Group

• Research and Development Office

• Southern Health and Social Services Board

• Western Health and Social Services Board

The quality of data in this project is a result of the work of the present and past Registry Tumour VerificationOfficers especially Patricia Donnelly, Helen Hanlon, Dr Carmel Corr, Elinor Johnston, Mary McCartney and EileenSheppard who meticulously extracted detailed information from clinical records for analysis and presentation inthis report. The analysis of data was largely undertaken by Heather Kinnear. A special word of gratitude tothe Medical Records staff from all the hospitals in Northern Ireland who, in the course of the audit for all sites,pulled an estimated 10,000 charts.

We are grateful to the clinicians who commented on the detail of data to be collected, its interpretation andfinal presentation.

The work of the N. Ireland Cancer Registry including the production of this report is the result of the work ofthe team listed below:

Bernadette Anderson Dr Lesley Anderson Carmel Canning Dr Denise Catney

Kate Donnelly Patricia Donnelly Deirdre Fitzpatrick Colin Fox

Wendy Hamill Helen Hanlon Anita Jones Jackie Kelly

Heather Kinnear Julie McConnell Susan McGookin Dr Richard Middleton

Pauline Monaghan Emma Montgomery Dr Liam Murray Giulio Napolitano

Dr Lisa Ranaghan Dr Jeffrey Robertson Breige Torrans Rosemary Ward

I wish also to record my thanks to the Management Group and Council of the Registry who guide that work.

This presentation, I feel, has been enhanced by the stories from patients who have walked the patient journey.A journey we have attempted to analyse and quantify with a view to identifying current practice so cliniciansmay be facilitated in improving care.

A GavinDirector, NICR2005

II


PATIENT STORIES

“I am a 72 year old female who was diagnosed with bowel cancer in 1999.

My first symptom was an ache low down in the groin area. Over time the ache got worse. Then Inoticed I was unusually tired and out of breath going uphill.

I went to my GP who took blood tests and immediately referred me as I was very anaemic. I hada colonoscopy which was clear. My symptoms persisted and I had two more colonoscopies. I wasthen diagnosed and I had an operation. The hospital has an excellent “joined up” system. WhenI was told of the diagnosis, the specialist bowel cancer nurse was called and she explained exactlywhat would be done and gave me leaflets. She visited me daily in hospital as did my surgeon. Shealso came with the oncologist on his first visit to discuss chemotherapy. She assured me that shewas available at any time. I became aware of the Ulster Cancer Foundation and became a memberof their Patient Action Group.

On a practical level – if you have an unexplained ache or any of the recognised symptoms goimmediately to your doctor and if the symptoms persist after having been given the “all clear” seeka second opinion.

People need to know that help is available on an on-going basis. Most of us will experience cancerpersonally or through family or friends.

It is important to know at the time of diagnosis what help is available – constant publicity isnecessary. Also medical schools should be more aware of the necessity of sensitivity on the part ofdoctors and surgeons when imparting bad news.

Cancer patients used to be surrounded by despair but thanks to better treatments and the supportof voluntary organisations we are surrounded by hope”.

~

“I had been loosing blood for almost twelve months. I had various tests but nothing showed up.I knew something was wrong, then I had a special X-ray. They found I had bowel cancer. AlthoughI knew something was wrong I was shocked as it wasn’t in my family.

After a short course of radiotherapy I didn’t have to wait long for my operation. The doctor wasa real gentleman, he came to see me every day. I have a colostomy bag. I complained plenty aboutit, unfortunately it is not reversible. I had a great nurse who came to talk to me about the bag andhow to use it.

I got all the usual leaflets etc. but the one that gave me best hope was the story about a mountainclimber who also had a colostomy bag. I am on the road to recovery now”.

~

III


IV

“I was diagnosed with bowel cancer a year ago. I had been constipated for 3-4 months but I hadalways been a bit constipated. I had piles and was told it could be due to the piles.

I was sent to the hospital to get my piles treated and was put on a waiting list for a barium enemaexamination. This showed a large tumour. I had radiotherapy for one week before the surgery andthen I had an operation. This was followed up by a course of chemotherapy for about 7 monthswhen I felt sick and tired. I also had a colostomy bag for about 7 months.

The consultants always kept me in the picture. I was given very good information about the bagand how to operate it. I am very grateful I didn’t have to have the bag permanently. I feel greatnow two months after my chemotherapy.”


INTRODUCTION

This Report is the fifth in a series which examines in detail the pathway ofcare for cancer patients in Northern Ireland. Colorectal cancer is a majorcause of cancer incidence and death, and the years 1996 and 2001

represent two points in time either side of the publication of the CampbellReport “Cancer Services-Investing for the Future”1.

The Campbell Report resulted from the work of many clinicians, service planners and patients who workedtogether with the aim of improving cancer services in Northern Ireland. The Campbell Report made 14recommendations (see Appendix A).

Subsequent to the publication of the Campbell Report, a Cancer Working Group in Northern Ireland produceda sub-group report on Colorectal Cancer2 in 1996, which made specific comments and recommendations onthe future of colorectal cancer services in Northern Ireland (see below):

Comments (N. Ireland Colorectal Cancer Subgroup report)

1. Rationalisation of clinical services for colorectal cancer between a Cancer Centre and Cancer Units may bedifficult, while 18 acute hospitals continue to provide general medical and surgical services.Implementation of the Northern Ireland Regional Strategy for Acute Hospital Services, the Acute HospitalsReorganisation Project and the Report of the Cancer Working Group will hasten a process that has alreadystarted voluntarily with greater sub-specialisation in general surgery and general medicine.

2. Physicians and surgeons dealing with colorectal cancer are likely to be responsible for the management ofa broad spectrum of benign and malignant diseases of the colon and rectum. Malignant disease willrepresent only a small portion of the total practice for the majority of physicians and surgeons.

3. The Senate of the Surgical Royal Colleges, on the advice of specialist associations and the British Society ofGastroenterology, have outlined the curricula and training experience necessary for future specialistregistration in digestive diseases. Some future trainees will have tertiary level training in colorectal diseasesand will be expected to devote a substantial part of their clinical commitment to this speciality.

4. A “volume effect” cannot be demonstrated in the overall management of colon cancer but new evidenceis emerging that, in the surgical treatment of sigmoid and rectal cancers, better results are achieved bycolorectal and gastrointestinal surgeons than by general surgeons. These data refer to both disease-relatedand procedure-related mortality and morbidity and include lower recurrence rates, fewer stomas and more use of chemotherapy and radiation therapy. As a result of these practices, quality of life issues such ascontinence, influence of support groups and availability of enterostomal therapy nurses are now beingevaluated.

5. The provision of a multidisciplinary service for the management of colorectal cancer will, of necessity, belimited to a small number of sites due to the limited availability of qualified gastroenterologists and medical oncologists with a special interest in colorectal diseases. There is also limited availability of specialist support services e.g. specialist gastrointestinal radiology, pathology and endoscopy services inthe Province. Other essential services e.g. enterostomal therapy, nutritional support, intensive care,palliative care and acute pain services, will also, of necessity, be concentrated on a limited number of sites.

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6. Colorectal cancer will continue to present as medical and surgical emergencies (approximately 20% of allcolorectal cancers).

Recommendations (N. Ireland Colorectal Cancer Subgroup report)

1. There should be a multidisciplinary approach to the investigation and management of colorectal cancer.

2. Physicians and surgeons with a primary interest in colorectal diseases should be identified to generalpractitioners, the medical community, Purchasers and the public.

3. Designation as a specialist in colorectal and gastrointestinal diseases should be based on clinical expertise,experience, education and training.

4. The future management of colorectal cancer should be carried out mainly by a multidisciplinary group ofenthusiasts with training in colorectal diseases, rather than by occasional practitioners.

5. There should be agreed protocols of management generated by the multidisciplinary group and the resultsof treatment should be audited regularly.

6. Details of all new cases of colorectal cancer should be submitted to the Northern Ireland Colorectal CancerRegistry (subsequently subsumed into the N. Ireland Cancer Registry) and data from the first five years ofthe Registry should be disseminated widely.

7. Information about current standards of practice in colorectal diseases in the United Kingdom should bewidely disseminated to primary care physicians and Purchasers.

8. Clinical practice in colorectal cancer should be complemented by a commitment to basic, clinical andapplied research into the epidemiology, treatment and prevention of colorectal cancer.

In 1997, the NHS produced a document outlining Guidance on Commissioning Cancer Services: “ImprovingOutcomes in Colorectal Cancer”3. Key recommendations in relation to colorectal cancer are as follows:

• Colorectal cancer should be managed by multidisciplinary teams working to agreed protocols.

• Patients should be offered full information about their condition and treatment and have continuing accessto a member of the team.

• There should be adequate endoscopy facilities: colonoscopy completion and complication rates should bemonitored.

• Surgeons who treat rectal cancer should be able to demonstrate good results, particularly in terms of lowrecurrence rates.

• Pathologists should give comprehensive feedback on adequacy of surgery.

• Pre-operative radiotherapy should be available to treat rectal cancer.

• Adjuvant chemotherapy should be offered to suitable patients and multi-centre randomised controlled trialsshould be supported.

This guidance also provided a summary of recommendations in specific topic areas (see Appendix B).

We would expect that when investigating the 2001 data, the above 1997 recommendations would have beenimplemented. The Association of Coloproctology of Great Britain and Ireland in 2001 produced a report“Guidelines for the Management of Colorectal Cancer”4 a summary of which is included in Appendix Cfor completeness.


3

PROJECT AIMThis Report aims to measure changes to care for patients with Colorectal (colon, rectum,rectosigmoid junction and anus) cancer from a baseline in 1996 and to determine whether they arein keeping with the recommendations of the Campbell Report1.

BACKGROUND

The levels of colorectal cancer are similar in both sexes. The risk increases with age and is rare before 40 years.It is more common in the developed countries (USA, Canada, Northern and Western Europe etc) than in Asia,Africa and South America. In the UK, colorectal cancer is the second most common cause of cancer death afterlung cancer and the overall 5-year relative survival is less than 40%5. In Northern Ireland each year 479 menand 451 women are diagnosed with this cancer while 218 men and 213 women die from it. The high incidenceof this disease, together with the fact that improvement in mortality in recent years has been modest, highlightthe need for research into prevention, earlier diagnosis and better treatment.

Aetiology and risk factorsEnvironmental, nutritional, genetic/familial factors and pre-existing diseases of the colon are all associated withthis cancer.

Environmental factors The fact that Asians, Africans and South Americans assume the colon cancer risk of their adopted countrywithin a few generations gives evidence to the role of environmental factors in its development6.

NutritionalResults from a large international study investigating the links between cancer and nutrition has confirmed thatcolorectal cancer risk is associated with high consumption of red and processed meat, while a diet high in fishis protective7. Dietary fibre in this study is also shown to be protective8. The combination of these dietary factorsplays a major role in colorectal cancer as do lifestyle factors - alcohol and smoking, obesity and low physicalactivity9. Post menopausal hormone use (combined oestrogen and progesterone)10 and prolonged use of non-steroidal anti-inflammatory drugs has been shown to protect against colorectal cancer11.

Pre-existing conditionsPatients with pre-existing inflammatory bowel disease (e.g. ulcerative colitis) have a higher than average risk ofcolorectal cancer. The risk increases with the duration of the condition to 30% by the third decade of colitis.Colorectal tumours develop more often in patients with adenomatous (benign) polyps than those without suchpolyps. The risk of polyps undergoing cancerous change is related to their size and the histological type, withpolyps larger than 2cm having a 40% chance of malignant transformation12.

Genetic factorsThe risk of developing colorectal cancer is significantly increased in several forms of inherited susceptibility,which accounts for 5% of all colorectal cancers. Familial Adenomatous Polyposis (FAP) is inherited in anautosomal dominant fashion. These patients develop colonic and rectal polyps from an early age and if leftuntreated, all will develop colorectal cancer by the third or fourth decade. For this reason these high riskpatients usually have a prophylactic total colectomy. Hereditary Non-Polyposis Colorectal Cancer (HNPCC) isalso inherited as an autosomal dominant genetic defect. FAP and HNPCC families are offered genetic testingto identify whether or not individuals are gene carriers so that they can be offered colorectal cancer screening


from an early age. A third group of patients are at risk of colorectal cancer due to a strong family history ofcolorectal cancer, the exact genetic transmission of which has yet to be determined.

COLON CANCER - N. IRELANDRates of colon cancer in Northern Ireland have consistently been higher than the rest of the UK. Cancer of thecolon accounts for 7% of cancer cases in men, 6% in women and 8% of cancer deaths in men and women.In 2001 colon cancer was the fourth most common cancer in males and females. On average, 301 males and312 females were diagnosed as having colon cancer each year (1993-2001). The median age at diagnosis was71 for males and 73 for females. Each year on average 155 males and 162 females die from colon cancer. In2001, it was the third most common cause of cancer death in males and females13.

Five-year relative survival rates were similar for males and females at 55%, showing an improvement in survivalin the more recent diagnostic period (1996-99) compared with 1993-96. Survival is very dependent on thestage of disease at presentation. Patients presenting with early Stage I disease had a 5-year relative survivalrate of 97%, compared with 14% for patients with late Stage IV disease13.

Between 1993 and 2001, rates of colon cancer in males and females decreased significantly by an average of6 and 8 cases per year respectively. In the same period, deaths also fell for males and females.

RECTUM, RECTOSIGMOID (RS) JUNCTION & ANUS - N. IRELANDIn Northern Ireland cancers of the rectum, rectosigmoid junction and anus account for 4% of cancer cases anddeaths in men and 3% of cancer cases and deaths in women. In 2001, rectal cancer was the fifth mostcommon cancer in males and sixth most common in females. On average, 178 males and 139 females werediagnosed with this cancer each year between 1993-2001. The median age at diagnosis was 69 years for malesand 72 years for females. Each year on average 63 males and 51 females die from rectal cancer. In 2001, itwas the eighth and tenth most common cause of cancer mortality in males and females respectively13.

The 5-year survival rates were similar for males and females, and for both periods (1993-96, 1996-99), at over50%. Survival is very dependent on the stage of disease at presentation. Patients presenting with early StageI disease had a 5-year relative survival rate of 90%, compared to 16% for patients with late Stage IV disease13.

Between 1993 and 2001, there was no change in the rate of new cases or deaths from rectal cancer in eithermales or females13.

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METHODS

DATA COLLECTIONRegistry Tumour Verification Officers (TVOs) collected data by reviewing clinical notes of patients with a newprimary colorectal cancer already registered with the N. Ireland Cancer Registry in 1996 and 2001. This, inmany cases, involved review of notes from several hospitals. Data were then entered into an electronicproforma, which had been developed with the guidance of relevant clinicians; copy available atwww.qub.ac.uk/nicr/racc.htm

EXCLUSIONS & ANALYSESPatients were excluded if their records lacked sufficient information or if information was available only from adeath certificate (DCO). It was also decided to remove histological types such as lymphomas, sarcomas andcarcinoids because their natural history and management are different from those of other colorectal cancers.After cleaning and validation, data analysis was carried out using SPSS. Chi-square was used to test for significance, where appropriate, throughout the report. The Kaplan-Meier method was used for survivalanalysis.

CLASSIFICATIONIt is difficult to meaningfully group tumours of the colon, rectum, rectosigmoid (RS) junction and anus in areport such as this. Following consultation with the clinicians it was agreed that for the purposes of this auditreport, tumours in each of the four areas would be considered individually for some analyses, but for themajority of analyses, colon and RS junction tumours would be grouped together and rectal tumours would bedealt with separately. Numbers for anal tumours are small and so these are not reported separately in analysesbut are included in ‘colorectal totals’ where applicable.

Anatomical divisions of colon and rectum


RESULTSStudy patients

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• Data were available on 741 individuals in 1996 and 830 individuals in 2001. After all exclusions 725remained in 1996 and 815 in 2001.

• Rectal cancers were more common in males than females (60:40).

• Colon cancers occurred with similar frequencies in both sexes.

• The median age at diagnosis for colon cancer was 72 years, RS junction was 67 years, rectum was 70 yearsand anus was 74 years. There was no variation between the years 1996 and 2001.

• The increased number of RS junction cancers in 2001 reflects more precise use of coding classification.

Patients Colon RS Junction Rectum

1996 2001 1996 2001 1996 2001

Total patients 490 515 47 102 193 203

Exclusions – Death certificate only 1 1 0 0 0 0

Exclusions – Lack of information/comments 9 13 3 1 3 0

Total exclusions 10 14 3 1 3 0

Total reported on – male 238 (50%) 260 (52%) 24 (55%) 59 (58%) 113 (59%) 121 (60%)

Total reported on – female 242 (50%) 241 (48%) 20 (45%) 42 (42%) 77 (41%) 82 (40%)

Total reported on 480 501 44 101 190 203

Patients Anus All cases combined Rectum

1996 2001 1996 2001

Total patients 11 10 741 830

Exclusions – Death certificate only 0 0 1 1

Exclusions – Lack of information/comments 0 0 15 14

Total exclusions 0 0 16 15

Total reported on – male 5 (45%) 5 (50%) 380 (52%) 445 (55%)

Total reported on – female 6 (55%) 5 (50%) 345 (48%) 370 (45%)

Total reported on 11 10 725 815


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Socio-economic status of study patients

• If a disease is not related todeprivation in the generalpopulation, it is expected that20% of all cases of disease wouldfall in each quintile. Our datashow that there is no difference inthe levels of colorectal cancer withdeprivation in these populations(2 = 0.572, p>0.05).

Source of referral to specialist care

• In both years over 80% ofcolorectal cancer patients werereferred by their GPs.

Deprivation Quintile Number of Patients (%)

1996 (n=725) 2001 (n=815)

Quintile 1 (most affluent) 148 (20%) 192 (24%)

Quintile 2 144 (20%) 146 (18%)

Quintile 3 138 (19%) 135 (17%)

Quintile 4 150 (21%) 174 (21%)

Quintile 5 (least affluent) 145 (20%) 168 (21%)

Source Number of Patients (%)

1996 (n=725) 2001 (n=815)

General Practitioner (GP) 600 (83%) 709 (87%)

Surgeon 15 (2%) 27 (3%)

Physician 25 (3%) 35 (4%)

Radiology 0 3 (<1%)

Other* 41 (6%) 29 (4%)

Not recorded 44 (6%) 12 (1%)

*These included referrals from nursing homes, geriatrics, cardiology,urology, psychiatry and neurology.


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Details of GP Referrals

* A consultant referral is a referral between consultants, where the initial consultant visit was not related to cancer

** ‘Other’ comprised patients who presented as domiciliary visits, private patients, self referrals or those who presented to A&E

• The majority of patients presented via outpatients in both years with over one third of colon and RS junctioncancers presenting as surgical or medical emergencies (39% colon & RS Junction and 16% rectum).

Referrals Number of Patients (%)

Colon & RS Junction Rectum Anus

1996 2001 1996 2001 1996 2001 (n=434) (n=530) (n=158) (n=171) (n=8) (n=8)

Surgical emergency 116 (27%) 150 (28%) 17 (11%) 18 (11%) 1 (12%) 1 (12%)

Medical emergency 49 (11%) 55 (11%) 6 (4%) 9 (5%) 0 0

Consultant * 1 (<1%) 5 (1%) 0 1 (<1%) 0 0

Outpatients 231 (53%) 271 (51%) 122 (77%) 126 (74%) 7 (88%) 7 (88%)

Other ** 28 (6%) 39 (7%) 9 (6%) 15 (9%) 0 0

Not recorded 9 (2%) 10 (2%) 4 (3%) 2 (1%) 0 0

Referrals Number of Patients (%)

All cases combined

1996 2001

(n=600) (n=709)

Surgical Emergency 134 (22%) 169 (24%)

Medical Emergency 55 (9%) 64 (9%)

Consultant * 1 (<1%) 6 (<1%)

Outpatients 360 (60%) 404 (57%)

Other ** 37 (6%) 54 (8%)

Not recorded 13 (2%) 12 (2%)


Family history of colorectal and other cancers recorded in notes

• There was better recording offamily history of colorectal andother cancers by 2001.

Co-morbidities (NOTE: Each patient may have had more than one co-morbidity except for colitis/ulcerative colitis)

• 9% of patients had a record in their hospital notes of some chronic, non malignant bowel disease (2001data).

• 11% of patients had a personal history of other malignancy (8% if non melanoma skin cancers areexcluded).

The figures, particularly for Irritable Bowel Syndrome and Diverticular Disease appear to be underestimatedcompared to reported levels in a general population of about 15% for Irritable Bowel Syndrome and about40% for Diverticular Disease14. This may represent under-recording of this data in the notes of our studypatients and/or inclusion of asymptomatic patients in the general population survey14.

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Family History Number of Patients (%)

1996 (n=725) 2001 (n=815)

Colorectal cancer recorded 59 (8%) 103 (13%)

Not recorded 513 (71%) 385 (47%)

Other cancer recorded 40 (6%) 93 (11%)

Not recorded 559 (77%) 431 (53%)

Co-morbidity Number of Patients (%)

1996 (n=725) 2001 (n=815)

Ulcerative colitis 3 (<1%) 6 (<1%)

Colitis (non infective) 2 (<1%) 2 (<1%)

Crohns disease 5 (<1%) 7 (<1%)

Familial adenomatous polyposis 0 7 (<1%)

Irritable bowel 3 (<1%) 6 (<1%)

Diverticular disease 32 (4%) 42 (5%)

Other malignancy (excluding NMS*) 44 (6%) 68 (8%)

* NMS = Non Melanoma Skin


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Symptoms/signs at presentation (NOTE: Patients may present with more than one symptom)

Symptom/sign Percentage of Patients

Colon & RS Junction Rectum

1996 (n=524) 2001 (n=602) 1996 (n=190) 2001 (n=203)

Weight loss 34% 42% 30% 35%

Anaemia 26% 32% 14% 12%

Rectal bleeding 34% 37% 77% 80%

Altered bowel habit 37% 39% 57% 53%

Lethargy 19% 30% 10% 16%

Constipation 27% 38% 25% 26%

Tenesmus* 6% 10% 26% 26%

Diarrhoea 26% 27% 47% 33%

Obstructed/perforated bowel 13% 13% 2% 2%

Abdominal pain 41% 55% 29% 26%

Symptom/sign Percentage of Patients

Anus All cases combined

1996 (n=11) 2001 (n=10) 1996 (n=725) 2001 (n=815)

Weight loss 27% 30% 34% 40%

Anaemia 0 0 28% 27%

Rectal bleeding 64% 50% 46% 48%

Altered bowel habit 55% 40% 43% 42%

Lethargy 27% 20% 17% 26%

Constipation 45% 30% 26% 35%

Tenesmus* 45% 30% 12% 14%

Diarrhoea 9% 10% 31% 28%

Obstructed/perforated bowel 0 0 10% 10%

Abdominal pain 18% 0 35% 47%

* Tenesmus is the sensation of incomplete rectal emptying

SymptomsThe symptoms of colorectal cancer vary according to the site. Cancers of the right side of the colon oftenpresent with symptoms such as anaemia, abdominal mass or intestinal obstruction.

Cancers occurring in the left side of the colon generally cause a change in bowel habit, colicky abdominal painand/or obstructive symptoms.

Rectal cancers more often present with bleeding, change in bowel habit and/or rectal fullness and tenesmus*.


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0

20

40

60

80

Anaemia Rectal bleeding Alt bowel habit Tenesmus Diarrhoea Obstr/perf bowel Abdom pain

Symptom/Sign

Perc

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)

Col

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RS

Rect

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Col

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RS

Rect

um

Col

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RS

Rect

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Col

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RS

Rect

um

Col

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Rect

um

Col

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RS

Rect

um

Col

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Rect

um

1996

2001

Symptom/Sign 1 month 2-5 6-11 12 or Duration Totalor less months months more not Symptomatic

months recorded Patients(%of totalpatients)

Weight loss 1996 10% 31% 10% 15% 37% 176 (34%)2001 8% 34% 12% 15% 30% 254 (42%)

Anaemia 1996 9% 17% 9% 7% 58% 138 (26%)2001 2% 14% 7% 13% 64% 195 (32%)

Rectal bleeding 1996 26% 23% 12% 13% 26% 178 (34%)2001 15% 29% 12% 13% 31% 226 (37%)

Altered bowel habit 1996 22% 29% 11% 9% 29% 194 (37%)2001 20% 25% 7% 10% 38% 236 (39%)

Lethargy 1996 14% 34% 6% 7% 39% 100 (19%)2001 16% 24% 4% 8% 49% 182 (30%)

Constipation 1996 29% 21% 9% 7% 34% 142 (27%)2001 25% 21% 5% 9% 40% 229 (38%)

Tenesmus 1996 16% 33% 8% 9% 34% 31 (6%)2001 19% 3% 0 7% 71% 59 (10%)

Diarrhoea 1996 24% 29% 11% 15% 21% 136 (26%)2001 22% 24% 4% 10% 40% 163 (27%)

Abdominal pain 1996 34% 18% 6% 6% 36% 215 (41%)2001 34% 21% 7% 7% 31% 333 (55%)

Symptoms/signs for patients in 1996 and 2001 (excludes patients with anal cancer)

• Symptoms recorded were generally similar in both years.

• Over one third (37%) of colon and RS junction cancer patients and 80% of rectal cancer patients had rectalbleeding.

• About one in eight (13%) of colon and RS junction cancer patients were recorded as presenting withobstructed/perforated bowel.

• The proportion of rectal cancer patients recorded as presenting with diarrhoea fell from 47% in 1996 to33% in 2001.

Duration of symptoms for Colon and RS Junction patients in 1996 and 2001 (NOTE: Not all patients with

symptoms had duration recorded)


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Duration of symptoms for Rectum patients in 1996 and 2001 (NOTE: Not all patients with symptoms had duration

recorded)

• Recording of symptom duration was poor in both years.

• Of those who had rectal bleeding, at least 21% of rectal patients and 25% of colon and RS junction patientshad this symptom for over 6 months. This was similar in both years.

• Of those who had altered bowel habit, at least 25% of rectal patients and 17% of colon and RS junctionpatients had this symptom for over 6 months. This was similar in both years.

• 11% of symptomatic colorectal cancer patients had abdominal pain for over 6 months.

Symptom/Sign 1 month 2-5 6-11 12 or Duration Totalor less months months more not Symptomatic

months recorded Patients(%of totalpatients)

Weight loss 1996 8% 39% 6% 15% 32% 57 (30%)2001 7% 35% 13% 11% 34% 71 (35%)

Anaemia 1996 11% 18% 0 0 71% 27 (14%)2001 0 4% 0 0 96% 25 (12%)

Rectal bleeding 1996 22% 29% 11% 10% 28% 146 (77%)2001 20% 31% 12% 10% 27% 162 (80%)

Altered bowel habit 1996 25% 25% 9% 7% 34% 108 (57%)2001 12% 35% 17% 8% 28% 108 (53%)

Lethargy 1996 26% 35% 6% 0 32% 19 (10%)2001 19% 19% 9% 0 53% 32 (16%)

Constipation 1996 20% 28% 4% 2% 46% 48 (25%)2001 11% 28% 8% 17% 36% 53 (26%)

Tenesmus 1996 16% 40% 16% 0 28% 49 (26%)2001 17% 28% 9% 8% 38% 53 (26%)

Diarrhoea 1996 31% 29% 8% 7% 25% 89 (47%)2001 18% 37% 13% 7% 25% 68 (33%)

Abdominal pain 1996 32% 20% 4% 7% 38% 56 (29%)2001 17% 44% 4% 4% 31% 52 (26%)


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1996 (n=524) 2001 (n=602) 1996 (n=343) 2001 (n=385)

Royal Victoria (RVH)*

Belfast City (BCH)*

Ulster (UH)**

Altnagelvin (AH)**

Craigavon Area (CAH)**

Antrim (ANT)**

Mater (MIH)

Coleraine/Causeway (COL/CAU)

Mid Ulster (MUH)

Tyrone County (TCH)

Whiteabbey (WHA)

Daisy Hill (DHH)

Erne (ERN)

Downe (DH)

Lagan Valley (LVH)

Ulster Independent Clinic (UIC)***

South Tyrone (STH)

Armagh Community (ACH)****

Ards (AR)****

Banbridge (BBH)****

Moyle (MLE)

Belvoir Park (BPR)

Waveney (WAV)****

Bangor Community (BGR)****

Lurgan (LGH)

Masserene (MAS)

Not Recorded

Hospital Number of Patients (%)

Including Emergencies Excluding Emergencies

49 (9%)

39 (7%)

57 (11%)

55 (10%)

25 (5%)

46 (9%)

32 (6%)

32 (6%)

14 (3%)

13 (2%)

27 (5%)

32 (6%)

15 (3%)

21 (4%)

20 (4%)

1 (<1%)

15 (3%)

0

8 (2%)

1 (<1%)

3 (<1%)

1 (<1%)

1 (<1%)

0

1 (<1%)

1 (<1%)

15 (3%)

56 (9%)

30 (5%)

85 (14%)

64 (11%)

55 (9%)

71 (12%)

25 (4%)

28 (5%)

20 (3%)

22 (4%)

18 (3%)

32 (5%)

22 (4%)

18 (3%)

27 (4%)

8 (1%)

10 (2%)

1 (<1%)

0

0

0

0

0

1 (<1%)

0

0

9 (1%)

31 (9%)

28 (8%)

27 (8%)

37 (11%)

14 (4%)

30 (9%)

18 (5%)

16 (5%)

10 (3%)

10 (3%)

16 (5%)

23 (7%)

9 (3%)

11 (3%)

16 (5%)

1 (<1%)

10 (3%)

0

7 (2%)

1 (<1%)

2 (<1%)

1 (<1%)

1 (<1%)

0

1 (<1%)

1 (<1%)

22 (6%)

29 (8%)

16 (4%)

50 (13%)

40 (10%)

36 (9%)

39 (10%)

23 (6%)

19 (5%)

13 (3%)

9 (2%)

12 (3%)

24 (6%)

16 (4%)

11 (3%)

19 (5%)

8 (2%)

10 (3%)

1 (<1%)

0

0

0

0

0

1 (<1%)

0

0

9 (2%)

Hospital of presentation (Colon and RS Junction)

* Cancer Centre ** Cancer Unit *** The Ulster Independent Clinic is a private hospital **** Changed to community healthfacility with no inpatient facilities by 2001

• 524 patients with cancer of the colon or RS junction presented to 24 hospitals in 1996 and 602 patientspresented to 19 hospitals in 2001. Excluding emergencies, the pattern was the same.

• By 2001, 60% of patients presented to a Cancer Unit/Centre.

• In both years approximately one third of colon and RS junction patients were recorded as presenting asemergencies.


14

1996 (n=190) 2001 (n=203) 1996 (n=163) 2001 (n=172)

Royal Victoria (RVH)*

Belfast City (BCH)*

Ulster (UH)**

Altnagelvin (AH)**

Craigavon Area (CAH)**

Antrim (ANT)**

Mater (MIH)

Coleraine/Causeway (COL/CAU)

Mid Ulster (MUH)

Tyrone County (TCH)

Whiteabbey (WHA)

Daisy Hill (DHH)

Erne (ERN)

Downe (DH)

Lagan Valley (LVH)

Ulster Independent Clinic (UIC)***

South Tyrone (STH)

Armagh Community (ACH)****

Ards (AR)****

Banbridge (BBH)****

Moyle (MLE)

North West Independent (NWC)***

Waveney (WAV)****

Masserene (MAS)

Belvoir Park (BPR)

Not Recorded

Hospital Number of Patients (%)Including Emergencies Excluding Emergencies

Hospital of Presentation (Rectum)

* Cancer Centre ** Cancer Unit *** The Ulster Independent Clinic and the North West Independent Clinic are private hospitals**** Changed to community health facility with no inpatient facilities by 2001

• 190 patients with cancer of the rectum presented to 23 hospitals in 1996 and 203 patients presented to 22hospitals in 2001. Excluding emergencies, the pattern was the same.

• Just over 50% presented to a Cancer Unit/Centre in both years.

• In both years, 15% of rectal cancer patients were recorded as presenting as emergencies.

• 11 patients with cancer of the anus presented to 9 hospitals in 1996 and 10 patients presented to 5hospitals in 2001 (not shown).

• In 2001, 70% of patients with cancer of the anus presented to a Cancer Unit/Centre.

18 (9%)

23 (12%)

18 (9%)

9 (5%)

20 (10%)

14 (7%)

12 (6%)

12 (6%)

7 (4%)

9 (5%)

5 (3%)

6 (3%)

8 (4%)

5 (3%)

8 (4%)

1 (<1%)

5 (3%)

0

1 (<1%)

1 (<1%)

1 (<1%)

0

3 (2%)

1 (<1%)

1 (<1%)

2 (1%)

28 (14%)

5 (2%)

19 (9%)

25 (12%)

14 (7%)

13 (6%)

15 (7%)

12 (6%)

4 (2%)

6 (3%)

2 (1%)

8 (4%)

7 (3%)

7 (3%)

14 (7%)

6 (3%)

6 (3%)

1 (<1%)

1 (<1%)

1 (<1%)

3 (1%)

1 (<1%)

0

0

0

5 (2%)

17 (10%)

20 (12%)

15 (9%)

7 (4%)

16 (10%)

14 (9%)

10 (6%)

11 (7%)

8 (5%)

7 (4%)

5 (3%)

4 (2%)

7 (4%)

4 (2%)

5 (3%)

1 (<1%)

3 (2%)

0

1 (<1%)

1 (<1%)

1 (<1%)

0

3 (2%)

1 (<1%)

1 (<1%)

2 (1%)

22 (13%)

4 (2%)

17 (10%)

22 (13%)

13 (8%)

9 (5%)

12 (7%)

11 (7%)

3 (2%)

4 (2%)

2 (1%)

8 (5%)

5 (3%)

7 (4%)

11 (6%)

6 (3%)

6 (3%)

1 (<1%)

1 (<1%)

1 (<1%)

3 (2%)

1 (<1%)

0

0

0

3 (2%)


15

Patients presenting within their own Board (Colon, RS Junction and Rectum)

• For patients with colorectal cancer, the majority presented to a hospital within their own Board of residence.This pattern changed little between 1996 and 2001.

• All of the anal cancer patients presented to a hospital in their own Board of residence in both 1996 and2001 (not shown).

HOSPITALS ATTENDEDPercentage of patients attending one, two or three hospitals (excludes patients with anal cancer)

• 25% of all colorectal patients in 1996 and 13% in 2001 attended Belvoir Park Hospital (Northern IrelandRadiotherapy Centre). This reduction likely reflects the transfer of chemotherapy services to the CancerCentre at Belfast City Hospital and the Cancer Units.

Board of Residence Number of Patients

Colon and RS Junction Rectum

1996 (n=524) 2001 (n=602) 1996 (n=190) 2001 (n=203)

NHSSB 122 (79%) 138 (83%) 39 (80%) 31 (79%)

EHSSB 196 (97%) 221 (97%) 82 (96%) 81 (93%)

SHSSB 69 (83%) 86 (81%) 31 (97%) 30 (83%)

WHSSB 79 (94%) 104 (96%) 22 (92%) 39 (95%)

0

20

40

60

80

100

1996 2001 1996 2001 1996 2001

1 hospital 2 hospitals 3 hospitals

1996 2001 1996 2001 1996 2001

1 hospital 2 hospitals


3 hospitals

Number of Hospitals Attended

Perc

enta

ge o

f Pa

tient

s (%

)

Other

Belvoir


16

Investigations (NOTE: Patients may have received more than one type of investigation)

Investigation Number of Patients (%)Colon & RS Junction Rectum

1996 (n=524) 2001 (n=602) 1996 (n=190) 2001 (n=203)

Sigmoidoscopy 218 (42%) 224 (37%) 150 (79%) 151 (74%)

Barium enema 382 (73%) 389 (65%) 105 (55%) 99 (49%)

Barium meal 27 (5%) 9 (1%) 5 (3%) 1 (<1%)

USS abdomen 293 (56%) 311 (52%) 105 (55%) 70 (34%)

Endorectal USS 2 (<1%) 7 (<1%) 3 (2%) 22 (11%)

CT abdomen 83 (16%) 215 (36%) 40 (21%) 134 (66%)

Colonoscopy 135 (26%) 207 (34%) 33 (17%) 61 (30%)

MRI scan 1 (<1%) 3 (<1%) 1 (<1%) 9 (4%)

Abdominal X-ray 150 (29%) 162 (27%) 29 (15%) 32 (16%)

Chest X-ray 338 (65%) 305 (51%) 108 (57%) 103 (51%)

• By 2001, patients with colorectal cancer were more likely to have a colonoscopy and/or a CT scan of the abdomen.

• By 2001, use of endorectal ultrasound had increased for rectal cancer patients to 11%.

• In 1996 and 2001, patients 80 years and over with colon and RS junction or rectal cancer had similar investigationsto those 79 years and under (p>0.05).

Investigations by age (Number of patients in each age category and percentage undergoing procedures)

79 years and under 80 years and over

1996 2001 1996 2001

Colon & RS Junction Barium Enema 415 (75%) 462 (68%) 109 (66%) 140 (53%)

CT abdomen 415 (16%) 462 (37%) 109 (14%) 140 (33%)

Colonoscopy 415 (26%) 462 (37%) 109 (24%) 140 (26%)

Rectum Barium Enema 158 (54%) 171 (50%) 32 (63%) 32 (44%)

CT abdomen 158 (22%) 171 (68%) 32 (19%) 32 (56%)

Colonoscopy 158 (17%) 171 (32%) 32 (19%) 32 (22%)


17

HISTOPATHOLOGY

Histopathological type

* Subtypes of Adenocarcinoma with different prognosis ** NOS = Not Otherwise Specified

• A high percentage of colorectal cancer included in this study had a histological diagnosis in both 1996 and2001 (88% and 92% respectively).

• As expected, the majority of colorectal cancers in both years were adenocarcinomas.

STAGING (see also Appendix D)

Colorectal cancers are usually staged after surgical exploration of the abdomen and pathological examinationof the resected specimen. Dukes stage was generally preferred by surgeons, while TNM stage group was rarelyrecorded. TNM variables were recorded in many patients without allocation to a stage group and in only 5%of surgery patients (n=4) was TNM stage group alone recorded (2001).

• By 2001, recording of Dukes stage in clinical notes had increased to 77% for colon and RS junction (59%in 1996) and to 62% for rectal cancers (58% in 1996).

• By 2001, recording of TNM stage in the clinical notes had increased to 14% for colon and RS junction (1%in 1996) and 7% for rectal cancers (1% in 1996).

• For colon and RS junction patients, 10% in 1996 and 8% in 2001 had neither TNM nor Dukes stagerecorded in the notes.

• For rectal patients, 17% in 1996 and 16% in 2001 had neither TNM nor Dukes stage recorded in the notes.

When stage was not recorded and there was sufficient information available in the clinical notes, Registry TVOswere able to assign a stage group (Registry-assigned stage). The AJCC Cancer Staging Manual was utilised15.

Sub-Type Number of Patients (%)Colon & RS Junction Rectum Anus

1996 (n=524) 2001 (n=602)1996 (n=190) 2001 (n=203) 1996 (n=11) 2001 (n=10)

Adenocarcinoma 436 (83%) 522 (87%) 168 (88%) 185 (91%) 6 (55%) 2 (20%)

Mucinous carcinoma* 14 (3%) 22 (4%) 4 (2%) 4 (2%) 0 0

Signet ring cell carcinoma* 3 (<1%) 4 (<1%) 1 (<1%) 1 (<1%) 0 0

Squamous cell carcinoma 0 0 1 (<1%) 1 (<1%) 3 (27%) 6 (60%)

Adenosquamous carcinoma 0 0 1 (<1%) 1 <1%) 0 0

Small cell carcinoma 0 1 (<1%) 0 0 0 0

Carcinoma, NOS** 0 1 (<1%) 1 (<1%) 0 0 0

Not available (NR) 71 (14%) 52 (9%) 14 (7%) 11 (5%) 2 (18%) 2 (20%)


18

Stage Number of Patients (%)All Patients Surgery Patients

1996 (n=524) 2001 (n=602) 1996 (n=463) 2001 (n=546)

Dukes A/TNM I 36 (7%) 57 (9%) 34 (7%) 50 (9%)

Dukes B/TNM IIA-IIB 187 (36%) 177 (29%) 185 (40%) 170 (31%)

Dukes C/TNM IIIA-IIIC 108 (20%) 190 (32%) 107 (23%) 188 (34%)

Dukes D*/TNM IV 142 (27%) 130 (22%) 109 (24%) 104 (19%)

TNM only staging recorded 2 (<1%) 4 (<1%) 2 (<1%) 4 (<1%)

Staging not possible** 51 (10%) 48 (8%) 28 (6%) 34 (6%)

* Modified Dukes stage ** Staging for these patients was not possible due to a lack of information recorded in the notes

Rectum - Stage (recorded in notes or Registry-assigned)

Stage Number of Patients (%)All Patients Surgery Patients

1996 (n=190) 2001 (n=203) 1996 (n=164) 2001 (n=171)

Dukes A/TNM I 24 (13%) 39 (19%) 23 (14%) 36 (21%)

Dukes B/TNM IIA-IIB 52 (27%) 41 (20%) 51 (31%) 41 (24%)

Dukes C/TNM IIIA-IIIC 40 (21%) 48 (24%) 40 (24%) 46 (27%)

Dukes D*/TNM IV 42 (22%) 42 (21%) 36 (22%) 27 (16%)

TNM only staging recorded 1 (<1%) 1 (<1%) 1 (<1%) 1 (<1%)

Staging not possible** 32 (17%) 33 (16%) 14 (9%) 21 (12%)

* Modified Dukes stage ** Staging for these patients was not possible due to a lack of information recorded in the notes

• Using information available in the notes it was possible to assign a Dukes stage to about 90% of colonand RS junction cancers and 84% of rectal cancers in both years.

• The increase in percentage of node positive cancers (Dukes C) reflects improved lymph node resection.

Colon & RS Junction - Stage (recorded in notes or Registry-assigned)Dukes A and B tumours are confined to the bowel wall, while Dukes C tumours have metastasised to theregional lymph nodes. Dukes D indicates a tumour that has spread to other organs.


19

Patients with insufficient data for Staging

• The percentage of patients with colorectal cancer for whom it was possible to determine stage increasedbetween 1996 and 2001 in all Boards (except EHSSB and WHSSB for rectum only), with the most markedimprovement evident for residents of the Northern Board area.

• Staging in the Western Board for rectal cancers was the best in both years.

Colon & RS Junction - Patients staged in each year as a percentage of patients having surgery in eachhospital (Dukes stage as recorded in the clinical notes)

0

20

40

60

80

100

AH (4

9,58

)AN

T (5

1,63

)AR

DS (3

,0)

BCH

(31,

70)

COL/

CAU

(27,

26)

CAH

(28,

63)

DH (2

0,11

)DH

H (3

0,30

)ER

N (1

0,17

)LV

H (1

9,26

)M

IH (2

9,27

)M

UH (1

4,17

)RV

H (5

2,65

)ST

H (1

2,0)

TCH

(14,

20)

UH (4

9,75

)UI

C (1

,4)

WHA

(24,

16)

Hospital of Operation (Number of Operations 1996,2001)

Perc

enta

ge o

f Pa

tient

s St

aged

19962001

Area of Residence Number of Patients

Colon and RS Junction Rectum

1996 2001 1996 2001

NHSSB 11 (22%) 20 (12%) 5 (16%) 5 (13%)

EHSSB 28 (14%) 14 (6%) 17 (20%) 18 (21%)

SHSSB 4 (8%) 5 (5%) 7 (22%) 5 (14%)

WHSSB 8 (16%) 9 (8%) 3 (9%) 5 (12%)

N. Ireland 51 (10%) 48 (8%) 32 (17%) 33 (16%)


Nodes Number of Resection Patients (%)Colon & RS Junction Rectum

1996 (n=433) 2001 (n=522) 1996 (n=146) 2001 (n=150)

None* 8 (2%) 14 (3%) 6 (4%) 10 (7%)

1 – 10 264 (61%) 203 (39%) 69 (47%) 71 (47%)

11 – 20 96 (22%) 221 (42%) 43 (29%) 57 (38%)

More than 20 6 (1%) 64 (12%) 1 (<1%) 6 (4%)

Not recorded** 59 (14%) 20 (4%) 27 (18%) 6 (4%)

* The majority of these patients had Dukes Stage D cancer, three quarters had a barium enema and over half had a USS abdomen** Over one third of these patients had Dukes Stage D cancer, half had a sigmoidiscopy and three quarters had a barium enema

20

Rectum - Patients staged in each year as a percentage of patients having surgery in each hospital(Dukes stage as recorded in the clinical notes)

• Recording of Dukes stage in colorectal cancer patients was good and improved in the majority of hospitalsbetween 1996 and 2001.

• In 2001, a level of 70% Dukes stage allocation was achieved in 14 hospitals for colon and RS junction and11 hospitals for rectal cancer patients.

Nodal Assessment

The AJCC Cancer Staging Manual15 recommends that 7-14 nodes are examined in a resection specimen. As thenumber of nodes examined for staging of colon cancers is itself a prognostic variable16 we analysed thepercentage of patients having no nodes examined, 1-10, 11-20 and more than 20 nodes respectively.

Number of lymph nodes examined

0

20

40

60

80

100

Perc

enta

ge o

f Pa

tient

s St

aged

19962001

AH (8

,28)

ANT

(18,

17)

BCH

(18,

7)

COL/

CAU

(11,

9)CA

H (1

8,19

)DH

(5,3

)DH

H (4

,7)

ERN

(5,0

)LV

H (7

,14)

LGH

(1,1

0)M

IH (1

0,12

)

RVH

(20,

24)

STH

(5,0

)TC

H (7

,14)

UH (1

3,22

)UI

C (1

,4)

WHA

(4,2

)

MUH

(5,1

0)

Hospital of Operation (Number of Operations 1996,2001)


21

MDM Number of Patients (%)Colon & RS Junction Rectum

1996 (n=524) 2001 (n=602) 1996 (n=190) 2001 (n=203)

Yes 1 (<1%) 107 (18%) 1 ( <1%) 62 (31%)

No/Not Recorded 523 (99%) 495 (82%) 189 (99%) 141 (69%)

• The percentage of colorectal resection patients with nodes examined increased (83% in 1996, 93% in 2001 not shown).

• By 2001, lymphadenectomy practice improved with the percentage of patients having over 11 nodesexamined increasing substantially for colon and RS junction tumours with a smaller percentage increase forrectal tumours.

• In 1996, only 1% of colon and RS junction patients had more than 20 nodes examined, while in 2001, thishad risen to 12%.

• For colon and RS junction tumours the median number of nodes examined was 10 in 1996 and 12 in 2001,similar to that reported recently in the literature16.

MULTIDISCIPLINARY TEAM MEETINGSThe effective management of colorectal cancer patients requires input from a range of experts.Multidisciplinary team meetings (MDMs) involve a group of healthcare professionals meeting to discuss thediagnosis and treatment of patients. As there are a range of potential treatments that could be performed,multidisciplinary discussions are of great importance. With respect to MDMs it should be noted that discussionsamong healthcare professionals, regarding the diagnosis and treatment of patients, may have taken place butmay not have been in recognised MDM format.

Multidisciplinary team meetings recorded in the notes

• Recording in the clinical notes that discussion at a MDM had taken place improved from less than 1% forall patients in 1996 to 18% for colon and RS junction and 31% for rectal patients in 2001.

• In 1996, a record of MDMs having taken place was found in the clinical notes from only two hospitals(Coleraine/Causeway and Daisy Hill). By 2001, this had improved with the notes from 9 additional hospitals(Altnagelvin, Antrim, Belfast City, Lagan Valley, Mater, Royal Victoria, Tyrone County, Ulster and Whiteabbeyhospitals) containing evidence of MDMs taking place.

• In one Cancer Unit, Craigavon, there were no records of MDMs having taken place in either year.


SURGICAL PROCEDURES

• For Colon and RS junction cancers: In 1996, 463 surgical procedures were carried out in 18 hospitals, whilein 2001, 546 operations were performed in 16 hospitals.

• For Rectal cancers: In 1996, 164 surgical procedures were carried out in 18 hospitals, while in 2001, 171operations were performed in 14 hospitals.

• Seven operations in 1996 and three in 2001 were carried out on patients with cancer of the anus (71% in1996 and 100% in 2001 were performed in Cancer Units or Cancer Centre). All anal surgery patients alsoreceived chemotherapy.

• By 2001, 65% of colon and RS junction cancer surgery and 68% of rectal cancer surgery was performed inthe Cancer Centre or Cancer Units.

• For residents of the Northern Board there was a shift in the main hospital of treatment from the RoyalVictoria to Antrim.

• For patients residing in the Eastern Board, fewer main hospitals performed surgery for colorectal cancer in2001. The Royal Victoria, Ulster and Lagan Valley hospitals all saw an increase in surgery by 2001, whilelevels of surgery for rectal cancer in Belfast City Hospital had decreased.

Number of operations by hospital – 1996 & 2001 (Colon, RS Junction and Rectum)

• The most marked evidence of service reorganisation within a Board was for rectal cancer operations in theWestern Board where there was a four fold increase in the number of procedures performed in AltnagelvinHospital with a reduction in operations performed in other Western Board hospitals.

• In 1996, more colorectal cancer (excludes anus) operations were performed in the Royal Victoria Hospitalthan any other hospital, while by 2001, more operations were carried out in the Ulster Hospital.

22

0

10

20

30

40

50

60

70

80

Antri

m yaw'

C/eniar'C

yebbaetihW

retslU di

M

airot ciV layoR

ytiC tsafleB

retslU

retaM

ye llaV n aga L

enwo

D

sdrA

novagiarC

ll iH ys ia

D

enoryT htuoS

nagruL

ni vlegan tl A

enrE

ytnuoC enory T

Ulst

er In

depe

nden

t

NHSSB EHSSB SHSSB WHSSB IND

Hospital of Operation

Num

ber o

f Pro

cedu

res

1996 Colon/RS

2001 Colon/RS

1996 Rectum

2001 Rectum


Health Board of surgery (Colon & RS Junction)

• The majority of patients with cancer of the colon and RS junction or rectum were operated on within theirown Board of residence in both years.

• If a patient was not operated on in their own Board of residence, the operation most likely took place inthe Eastern Board.

• All anal cancer patients who had surgery were operated on within their own Board of residence in bothyears (not shown).

• For residents of the Southern Board there was a major shift in hospital of operation from Belfast CityHospital to Craigavon Hospital by 2001 (not shown).

23

Board of residence Board of OperationNHSSB EHSSB SHSSB WHSSB Total

NHSSB 1996

2001

EHSSB 1996

2001

SHSSB 1996

2001

WHSSB 1996

2001

114 (84%)

120 (80%)

1 (<1%)

0

0

0

1 (1%)

0

18 (13%)

25 (17%)

172 (99%)

201 (100%)

11 (14%)

5 (5%)

3 (4%)

4 (4%)

2 (1%)

4 (3%)

0

0

68 (86%)

91 (93%)

0

1 (1%)

2 (1%)

1 (1%)

0

0

0

2 (2%)

71 (95%)

92 (95%)

136

150

173

201

79

98

75

97

NHSSB 1996

2001

EHSSB 1996

2001

SHSSB 1996

2001

WHSSB 1996

2001

35 (80%)

25 (74%)

0

2 (3%)

0

1 (3%)

2 (10%)

0

5 (11%)

9 (26%)

70 (99%)

68 (97%)

1 (4%)

5 (16%)

2 (10%)

2 (6%)

1 (2%)

0

1 (1%)

0

27 (96%)

26 (81%)

0

0

3 (7%)

0

0

0

0

0

17 (80%)

33 (94%)

44

34

71

70

28

32

21

35

Health Board of surgery (Rectum)

Board of residence Board of OperationNHSSB EHSSB SHSSB WHSSB Total


24

SurgeryPatients had three main types of surgery (resection, stoma formation, open and close procedures). Resectionincludes abdomino-perineal resection, anterior resection, right hemicolectomy, left hemicolectomy, excision ofthe sigmoid colon and excision of the transverse colon. There were three main types of stoma formation –colostomy, caecostomy and ileostomy. Colostomy can be a temporary or permanent procedure. Open andclose surgery was not specified in detail and was recorded simply as “yes” or “no”.

• Anterior resection for rectal carcinomas was more commonly performed in 2001 with a correspondingdecrease in Abdomino-perineal resections, with the percentage of APER being comfortably less than 40%in both years, in keeping with current guidelines4.

• 86% of patients with cancer of the anus had a stoma formation in 1996 compared with 100% in 2001 (notshown).

Surgery (NOTE: A patient may have received more than one type of surgery)

Large bowel surgery

Surgery Number of Patients (%)

1996 (n=451) 2001 (n=539) 1996 (n=159) 2001 (n=156)

Abdomino-perineal resection (APER) 4 (<1%) 13 (2%) 51 (32%) 42 (27%)

Anterior resection 54 (12%) 82 (15%) 77 (48%) 95 (61%)

Right hemicolectomy 210 (47%) 215 (40%) 0 0

Left hemocolectomy 51 (11%) 73 (14%) 2 (1%) 0

Sigmoid colectomy 82 (18%) 104 (19%) 3 (2%) 2 (1%)

Transverse colectomy 9 (2%) 13 (2%) 0 0

Endoscopic excision 4 (<1%) 3 (<1%) 10 (6%) 9 (6%)

Rectosigmoidectomy/Hartmanns 11 (2%) 5 (1%) 9 (6%) 1 (<1%)

Other large bowel surgery * 26 (6%) 31 (6%) 7 (4%) 7 (4%)

*Other includes colectomy, bypass precodures and other precedures not specified.


Surgery Number of Patients (% of total patients)Colon & RS Junction Rectum

1996 2001 1996 2001

Resection only 390 (74%) 422 (70%) 67 (35%) 48 (24%)

Resection with stoma 43 (8%) 100 (17%) 79 (42%) 102 (50%)

Stoma formation only 9 (2%) 19 (3%) 9 (5%) 15 (7%)

Open and close 4 (<1%) 20 (3%) 0 0

Other surgery * 14 (3%) 14 (2%) 12 (6%) 5 (2%)

* Includes gynae operations at which colorectal cancer was discovered. NOTE: Stoma may be temporary or permanent

• By 2001, 82% of colorectal cancer patients had a resection (87% of colon & RS junction and 74% rectal).This was similar to 1996 (80%) but represented 93 more patients.

• There were 69% more stomas (temporary or permanent) in 2001 than 1996 with 29% of colorectal cancerpatients having a stoma as part of their treatment by 2001 (19% in 1996).

• The number of open and close procedures increased for colon and RS junction patients.


25

Total Mesenteric Excision (TME) confirmed in operative specimen TME involves careful dissection of the node-bearing mesorectum, and it is recommended for tumours in thelower two thirds of the rectum. Patients who have had TME have been shown to have lower recurrence ratesthan non-TME patients17.

Total mesenteric excision (TME)

• Recording that TME had been performed was similar in both years for patients with cancer of the rectum,but had increased for patients with cancer of the RS junction by 2001. However, as 89% of rectal patientshad nodes examined and 38% had between 11-20 nodes examined, it is likely that TME was performed butnot recorded in some cases.

Radiotherapy is not generally used for colon cancer.

• Only 11% of patients in 1996 and 6% in 2001 did not have a record of having surgery, chemotherapy orradiotherapy.

• Two thirds of colon cancer patients and 40% of rectal patients had surgery alone in 2001.

• A third of rectal cancer patients had chemotherapy in 2001, an increase from 23% in 1996, while a quarterof colon and RS Junction patients had chemotherapy in both years.

• 33% of all rectal cancer patients had radiotherapy in 2001, showing a very small increase since 1996 (28%)(not shown).

• There was a slight increase in the number of patients with rectal cancer who had a combination ofradiotherapy and surgery (10% vs 14%) (not shown).

TME Confirmed in notes Number of Patients (%)Rectum RS Junction

1996 (n=159) 2001 (n=127) 1996 (n=34) 2001 (n=90)

Yes 29 (18%) 24 (19%) 1 (3%) 18 (20%)

No 25 (16%) 50 (39%) 8 (24%) 31 (34%)

Not Recorded 105 (66%) 53 (42%) 25 (73%) 41 (46%)

Treatment Number of Patients (%)

1996 (n=480) 2001 (n=501) 1996 (n=234) 2001 (n=304)

Surgery alone 265 (55%) 334 (67%) 118 (50%) 126 (41%)

Chemotherapy (adjuvant and neo-adjuvant) 125 (26%) 126 (25%) 54 (23%) 103 (34%)

Radiotherapy* (adjuvant and neo-adjuvant) * * 57 (24%) 87 (29%)

Chemotherapy plus Radiotherapy* * * 26 (11%) 43 (14%)

No treatment 51 (11%) 26 (5%) 26 (11%) 23 (8%)


Treatment modalities as recorded in notes‘Neo-adjuvant’ chemotherapy refers to a preliminary cancer treatment that precedes a necessary second modality of treatment e.g. pre-operativechemotherapy. Adjuvant chemotherapy refers to a cancer treatment following another treatment type e.g. post-operative chemotherapy.


26

Chemotherapy (Colon, RS Junction, Rectum & Anus)

• In 1996, one quarter of patients hadchemotherapy which was recorded in2% of cases as neo-adjuvant. In2001, almost one third of patientshad chemotherapy which wasrecorded in 11% of cases as neo-adjuvant.

• The number of patients recorded ashaving adjuvant chemotherapydoubled by 2001.

Patients who did not receive any treatment - TVO assigned stage(excludes patients with anal cancer)

* Modified Dukes stage

• The patients with Dukes stage A disease who did not have any record of treatment were all over 70 yearsat the time of diagnosis. Some of these patients refused treatment while others were too ill with co-morbidities for further treatment. Three quarters of patients recorded as Dukes stage A who did not receivetreatment were deceased within one month of diagnosis. Some of stage A recorded patients may havebeen understaged.

• Approximately 50% of patients who did not receive active treatment and for whom a stage was knownwere Dukes stage D. 83% of the Dukes stage D patients and 72% of those patients for whom a stage wasnot recorded were deceased within one month of diagnosis.

Therapy Number of Patients (%)

1996 (n=179) 2001 (n=229)

Adjuvant 76 (42%) 141 (62%)

Neo-adjuvant 3 (2%) 25 (11%)

Not recorded 100 (56%) 63 (28%)

Dukes stage assigned by TVOs Number of Patients (%)

1996 2001

Dukes A 2 (6%) 4 (6%)

Dukes D* 18 (53%) 35 (49%)

Dukes Stage not recorded 14 (41%) 32 (45%)

Total 34 (5%) 71 (9%)


27

Frequency of operations

Consultant surgeon workload

• By 2001, there was evidence of specialisation in colorectal cancer surgery especially for rectal patients with56% of colon & RS junction and 29% of rectal patients operated on by a surgeon undertaking at least 10of these procedures annually. By 2001, 20% of all colon and RS junction surgery was performed by 4Consultant surgeons who collectively performed one fifth of all operations carried out in that year. By2001, one Consultant surgeon performed 13% of all rectal surgery.

• There was a reduction in the number of total operators for colorectal cancer (consultants, trainees andcareer grades) from 104 in 1996 to 90 in 2001. The number of consultant operators also fell from 77 in1996 to 65 in 2001. This excludes gastroenterologists who would have removed cancerous polyps duringcolonoscopy etc.

• There were 48 consultant operators who operated in both years, 29 who operated in 1996 only and 17who operated in 2001 only. There were 6 surgeons in training who operated in both years, 19 whooperated in 1996 only and 15 who operated in 2001 only.

• About 85% of procedures for patients with cancer of the colon and RS junction were carried out by 63Consultant surgeons in both years.

• Over 90% of procedures for patients with cancer of the rectum were carried out by 46 Consultant surgeonsin 1996 and 35 in 2001.

• By 2001, 25% of rectal and 10% of colon & RS junction procedures were being undertaken by operatorswho performed fewer than 5 operations, a significant improvement from 1996 (53% rectal, 16% colon &RS junction).

Operator grade Number of operators (% of total procedures)


1996 2001 1996 2001

Consultant surgeons * 62 (86%) 63 (86%) 46 (93%) 35 (94%)

Surgeons in training 25 (11%) 21 (12%) 6 (6%) 4 (5%)

Career grade surgeons 2 (<1%) 4 (1%) 0 0

Unknown 2 (2%) 1 (<1%) 1 (<1%) 0

Total operators 91 89 53 39

* Includes Locums

Number of Procedures Number of Surgical Procedures (% of total procedures)

Colon & RS junction Rectum

1996 2001 1996 2001

20 or more 1 (6%) 4 (20%) 0 1 (13%)

10 – 19 12 (36%) 13 (36%) 1 (8%) 2 (16%)

5 – 9 24 (42%) 22 (34%) 9 (39%) 11 (46%)

Less than 5 26 (16%) 24 (10%) 37 (53%) 22 (25%)

Total Consultant surgeons 62 63 46 35

Total surgeons in training 25 21 6 4

Total operators 91 89 53 39


28

TIMELINES/WAITING TIMESTimelines were examined for the following categories:

• colon and RS junction patients,

• rectum patients,

• colon and RS junction patients excluding emergency presentations and those receiving neo-adjuvantchemotherapy,

• rectum patients excluding emergency presentations and those receiving neo-adjuvant chemotherapy,

• all patients aged under 60 years at the time of diagnosis.

• Colon and RS junction patients who received a sigmoidoscopy and/or CT abdomen.

• Rectum patients who received a sigmoidoscopy and/or CT abdomen.

Colon & RS Junction - Timelines

Colon and RS Junction (Including Emergencies)

• Between 1996 and 2001, the percentage of patients seen within two weeks of referral was similar but thisrepresented more patients in 2001. The percentage of patients having their diagnosis confirmed within twoweeks of presentation to hospital was similar.

• The percentage of patients having surgery within 42 days of diagnosis remained steady at 97% in both years. The percentage of patients having surgery within 4 weeks of diagnosis was around 85% in both years, in keeping with current guidelines4.

• The slight reduction in patients having surgery within two weeks of diagnosis likely reflects increasedinvestigations and also use of neo-adjuvant treatment prior to surgery.

Time Number of Patients (%)

Referral - First seen First seen - Diagnosis Diagnosis - Surgeryat hospital

1996 2001 1996 2001 1996 2001

Same day 172 (33%) 233 (39%) 62 (12%) 19 (3%) 208 (45%) 371 (68%)

1 – 14 days 110 (21%) 116 (19%) 145 (28%) 196 (33%) 195 (42%) 80 (15%)

15 – 42 days 91 (17%) 139 (23%) 128 (24%) 168 (28%) 46 (10%) 75 (14%)

43 – 84 days 39 (7%) 65 (11%) 76 (15%) 103 (17%) 5 (1%) 16 (3%)

More than 84 days 25 (5%) 32 (5%) 60 (11%) 109 (18%) 6 (1%) 3 (<1%)

Minus values* 19 (4%) 1 (<1%) 27 (5%) 0 2 (<1%) 1 (<1%)

Not recorded 68 (13%) 16 (3%) 26 (5%) 7 (1%) 1 (<1%) 0

Total 524 602 524 602 463 546

* Diagnosis was made prior to hospital visit.


29

Colon and RS Junction - Timelines excluding emergencies and those who received neo-adjuvantchemotherapy which would delay surgery

Colon and RS Junction (Excluding Emergencies and patients receiving neo-adjuvant chemotherapy)

• Between 1996 and 2001, although the percentage decreased, the actual number of patients seen withintwo weeks of referral increased, reflecting increase in workload.

• Similarly, the actual number of patients having their diagnosis confirmed within two weeks of surgeryincreased as did the actual number having surgery within 42 days from diagnosis.

• The percentage of patients having surgery within four weeks remained steady at 80% in both years.

Rectal - Timelines



1996 2001 1996 2001 1996 2001

Same day 4 (7%) 14 (8%) 6 (10%) 6 (4%) 21 (39%) 91 (57%)

1 – 14 days 18 (30%) 39 (23%) 17 (28%) 38 (22%) 25 (46%) 33 (20%)

15 – 42 days 17 (28%) 63 (37%) 16 (26%) 35 (21%) 4 (7%) 25 (15%)

43 – 84 days 3 (5%) 31 (18%) 12 (20%) 43 (25%) 0 6 (3%)

More than 84 days 5 (8%) 14 (8%) 3 (5%) 44 (26%) 0 0

Minus values* 0 1 (<1%) 2 (3%) 0 0 0

Not recorded 14 (23%) 7 (4%) 5 (8%) 3 (2%) 4 (7%) 7 (4%)

Total Patients 61 169 61 169 54 162




1996 2001 1996 2001 1996 2001

Same day 73 (38%) 34 (17%) 27 (14%) 16 (8%) 41 (25%) 40 (23%)

1 – 14 days 36 (19%) 49 (24%) 65 (34%) 94 (46%) 74 (45%) 27 (16%)

15 – 42 days 31 (16%) 65 (32%) 40 (21%) 52 (26%) 43 (26%) 61 (36%)

43 – 84 days 14 (7%) 29 (14%) 28 (15%) 26 (13%) 4 (2%) 27 (16%)

More than 84 days 8 (4%) 15 (7%) 17 (9%) 12 (6%) 2 (1%) 16 (9%)

Minus values* 2 (1%) 0 1 (2%) 0 0 0

Not recorded 26 (14%) 11 (5%) 12 (6%) 3 (1%) 0 0

Total Patients 190 203 190 203 164 171



30

Rectum (Including Emergencies)

• Between 1996 and 2001, the percentage of patients seen within two weeks of referral decreased from58% to 41%. This may reflect the lower proportion presenting as emergencies. The percentage of patientshaving their diagnosis confirmed within two weeks of presentation to hospital increased from 49% to 54%.

• In 2001, the percentage of patients having surgery within 42 days from diagnosis decreased from 96% in1996 to 75% in 2001. This is likely to reflect increased use of newer diagnostic techniques and also neo-adjuvant therapy.

Rectal - Timelines excluding emergencies and those who received neo-adjuvant chemotherapywhich would delay surgery

Rectum (Excluding emergencies and patients receiving neo-adjuvant chemotherapy)

• Between 1996 and 2001, the percentage of patients seen within two weeks of referral remained steady at31% over both years. The percentage having their diagnosis confirmed within two weeks of presentationto hospital increased (38% to 45%).

• The percentage of patients having their elective surgery within 42 days from diagnosis decreased slightlyfrom 100% in 1996 to 89% in 2001.

Timelines for patients under 60 years do not differ significantly from those for all patients for colon and RSjunction or rectal cancer patients (not shown).



1996 2001 1996 2001 1996 2001

Same day 3 (10%) 3 (6%) 1 (3%) 2 (4%) 10 (37%) 14 (31%)

1 – 14 days 6 (21%) 13 (25%) 9 (31%) 21 (41%) 10 (37%) 10 (22%)

15 – 42 days 10 (34%) 21 (41%) 4 (14%) 12 (24%) 7 (26%) 18 (40%)

43 – 84 days 5 (17%) 8 (16%) 5 (17%) 13 (25%) 0 3 (8%)

More than 84 days 1 (3%) 3 (6%) 5 (17%) 3 (6%) 0 0

Minus values* 0 0 1 (3%) 0 0 0

Not recorded 4 (14%) 3 (6%) 4 (14%) 0 0 0

Total Patients 29 51 29 51 27 45



31

Colon & RS Junction - Waiting times for patients who received a Sigmoidoscopyand/or a CT abdomen

Rectum – Waiting times for patients who received a Sigmoidoscopy and/or a CT abdomen

• There was little difference in the numbers of colon and RS junction patients who received a sigmoidoscopywithin two weeks of referral (37% in 1996, 31% in 2001).

• Despite a threefold increase in the number of patients having CT abdomen, more patients and a higherproportion (30%) of colon and RS Junction patients had a CT abdomen within two weeks of referral by2001.

• There was no difference between 1996 and 2001 for rectal cancer patients in the time they waited foreither a sigmoidoscopy and/or a CT abdomen.

Time Number of Patients (%)Referral – Sigmoidoscopy Referral – CT abdomen

1996 2001 1996 2001

Same day 16 (7%) 6 (3%) 3 (4%) 6 (3%)

1 – 14 days 65 (30%) 63 (28%) 11 (13%) 57 (27%)

15 – 42 days 44 (21%) 60 (27%) 18 (22%) 49 (23%)

43 – 84 days 28 (13%) 34 (15%) 11 (13%) 39 (18%)

More than 84 days 19 (9%) 53 (24%) 20 (24%) 54 (25%)

Minus values* 14 (6%) 1 (<1%) 8 (10%) 0

Not recorded 32 (15%) 7 (3%) 12 (14%) 10 (5%)

Total 218 224 83 215

* Investigation was performed prior to referral for colorectal cancer

Time Number of Patients (%)Referral – Sigmoidoscopy Referral – CT abdomen

1996 2001 1996 2001

Same day 5 (3%) 3 (2%) 0 2 (1%)

1 – 14 days 44 (29%) 44 (29%) 8 (20%) 22 (16%)

15 – 42 days 47 (31%) 49 (32%) 14 (35%) 44 (33%)

43 – 84 days 20 (13%) 30 (20%) 7 (18%) 35 (26%)

More than 84 days 14 (9%) 18 (12%) 5 (13%) 22 (16%)

Minus values* 4 (3%) 0 4 (10%) 0

Not recorded 16 (11%) 7 (5%) 2 (5%) 9 (7%)

Total 150 151 40 134

* Investigation was performed prior to referral for colorectal cancer


32

Information recorded in notes

• Almost three quarters of patients in 2001 had a record of discussion of diagnosis and treatment plans inthe notes, an increase compared with 1996.

• By 2001, the number of patients referred to oncology increased to 59% (41% in 1996) and patientmanagement was more likely to be discussed with oncologists (50% in 1996 to 70% in 2001).

• The discussion of patient cases at multidisciplinary meetings greatly improved, yet by 2001, only about afifth of cases were recorded as having been discussed at these meetings.

• The recording of multidisciplinary treatment plans also greatly improved, yet was available for only a thirdof patients.

• The provision of written information or recording of interviews was rarely recorded in notes.

• The number of patients entered into clinical trials fell between 1996 (11%) and 2001 (less than 1%). Thismay reflect availability of suitable clinical trials. While most hospitals participated in trials in 1996, incontrast, by 2001 there were only 5 hospitals where patients were entered into clinical trials (Royal Victoria,Belfast City, Causeway, Lagan Valley and Whiteabbey).

• Referral to a stoma therapist increased. 67% of patients in 1996 and 82% in 2001 who underwent astoma formation were referred to a stoma therapist (not shown).

Information Number of Patients (%)

1996 (n=725) 2001 (n=815)

Diagnosis discussed with patient 352 (49%) 599 (73%)

Treatment plan discussed with patient 350 (48%) 572 (70%)

Written information given 7 (<1%) 31 (4%)

Consultation taped 1 (<1%) 6 (<1%)

Referred to oncology centre 298 (41%) 482 (59%)

Management discussed with oncologist 364 (50%) 570 (70%)

Seen by stoma therapist 94 (13%) 193 (24%)

Psycho-social needs considered 289 (40%) 700 (86%)

Clinical trial discussed with patient 82 (11%) 9 (1%)

Clinical trial recorded in notes 82 (11%) 7 (<1%)

Multidisciplinary case conference 2 (<1%) 171 (21%)

Multidisciplinary treatment plan recorded 1 (<1%) 280 (34%)


FOLLOW-UP CARE DETAILSThis relates to information recorded in the discharge letter from hospital to GP.

After care (NOTE: Patients may have had more than one referral)

• The most dramatic recorded increase was in referral to palliative care specialists (3% in 1996 to 46% in2001) with a doubling in referrals to Macmillan nurses to 10%, reflecting increased availability of theseservices.

• Referrals to Hospices and Marie Curie nurses remained steady at around 3% and 2% respectively.

Information in GP letter

• Overall, information to the GP greatly improved especially regarding the inclusion of information onprognosis which by 2001 was included in 83% of notes while 90% had a management plan.

• By 2001, only half of GP letters included information on whether the diagnosis had been discussed withthe patient.

33

After Care Number of Patients (%)

1996 (n=725) 2001 (n=815)

General Practitioner (GP) 49 (7%) 351 (43%)

Community nurse 21 (3%) 183 (22%)

Macmillan nurse 34 (5%) 78 (10%)

Hospice 25 (3%) 26 (3%)

Marie Curie nurse 15 (2%) 13 (2%)

Palliative care specialist 21 (3%) 372 (46%)

Psychologist referral 5 (<1%) 15 (2%)

Info on support groups/education supplied 1 (<1%) 5 (<1%)

Dietician referral 0 7 (<1%)

No onward referral recorded 91 (13%) 36 (4%)

Information Number of Patients (%)

1996 (n=725) 2001 (n=815)

Management plan 557 (77%) 730 (90%)

Prognosis 273 (38%) 675 (83%)

Diagnosis discussed with patient 187 (26%) 420 (52%)

Diagnosis discussed with family 127 (18%) 224 (27%)

Diagnosis not discussed with patient 66 (9%) 34 (4%)


34

PATIENT OUTCOMES Surgery outcomes

• Only small numbers of patients had anastomatic leaks or significant wound complications recorded in theclinical notes, with no significant difference between the years.

SurvivalSurvival analysis was performed on patients diagnosed in 1996 and 2001 with sub-group analysis for surgeryand non surgery patients and for stage.

Percentage of patients alive at various times after diagnosis

Colon, RS Junction & Rectum cancer observed survival by year (1996 & 2001)

• There was no significant difference in theoverall observed survival of patients withcancer of the colon or RS junction in eachyear (p>0.05). The same was true forpatients with cancer of the rectum (p>0.05).

Outcomes Number of Patients (%)Colon & RS Junction Rectum

1996 (n=463) 2001 (n=546) 1996 (n=164) 2001 (n=171)

Anastomatic leak 13 (3%) 20 (4%) 4 (2%) 9 (5%)

Significant wound complication 20 (4%) 48 (9%) 16 (10%) 18 (11%)

0

20

40

60

80

100

0 6 12 18 24

Months since Diagnosis

Cum

ulat

ive

Surv

ival

(%)

Colon & RSJunction1996(n=524)

Colon & RSJunction2001(n=602)

Rectum1996(n=190)

Rectum2001(n=203)

Time since Diagnosis Colon & RS Junction Rectum All Patients(Colon, RS Junction,

Rectum & Anus)

1996 2001 1996 2001 1996 2001

30 days 90% 91% 95% 96% 92% 92%

60 days 87% 88% 91% 91% 88% 89%

6 months 78% 78% 83% 82% 80% 79%

1 year 69% 72% 69% 75% 70% 73%

2 years 58% 60% 56% 61% 58% 61%

Total Patients 524 602 190 203 725 815


35

RESECTION VS NO RESECTIONPercentage of patients alive at various times after diagnosis

Colon & RS Junction cancer observed survival for resection vs no resection (1996 & 2001)

Rectal cancer observed survival for resection vs no resection (1996 & 2001)

• As expected survival for patients undergoing potentially curative resections was significantly better than nonresection patients, reflecting appropriate patient selection.

• There was no difference in survival between 1996 and 2001 for resection patients and non resectionpatients alike.

• Rectal cancer patients with resections appear to have improved survival in 2001 compared with 1996. Thishowever, did not reach statistical significance (p>0.05).

1996 2001 1996 2001

30 days 95% 94% 63% 69%

60 days 93% 92% 52% 55%

6 months 87% 85% 33% 30%

1 year 78% 79% 24% 22%

2 years 66% 67% 12% 14%

Total Patients 433 522 91 80

Time sinceDiagnosis

Colon & RS Junction

1996 2001 1996 2001

95% 98% 89% 87%

93% 96% 79% 73%

87% 93% 63% 44%

77% 87% 39% 34%

63% 74% 31% 17%

146 150 44 53

RectumResection patients Non surgery patients Resection patients Non surgery patients

0

20

40

60

80

100

0 6 12 18 24


Cum

ulat

ive

Surv

ival

(%) Resection

1996 (n=146)

Resection2001 (n=150)

No resection1996 (n=44)


0

20

40

60

80

100


)%( lavivr

uS evital

um

uC





0 6 12 18 24


Colon and RS Junction - Percentage of patients alive at various times after diagnosis by disease stage(1996 & 2001)

• Overall observed 2-year survival was about 60% in both years with no change between 1996 and 2001 forany single stage.

Colon & RS Junction observed survival by stage (both years combined)

• As expected there was a highly significant difference in observed survival for stage at diagnosis (p<0.001),with earlier stage generally having better survival.

36

Year Time Stage I Stage II Stage III Stage IV Unstaged All Patients1996 30 days 91% 97% 93% 84% 75% 90%

60 days 90% 96% 92% 78% 65% 87%6 months 89% 95% 90% 51% 54% 78%1 year 88% 92% 86% 31% 44% 69%2 years 86% 83% 68% 15% 32% 58%Total Patients 36 180 108 133 67 524

2001 30 days 96% 97% 95% 85% 68% 91%60 days 95% 97% 91% 79% 57% 88%6 months 94% 95% 85% 51% 45% 78%1 year 91% 93% 80% 37% 40% 72%2 years 86% 88% 68% 17% 26% 60%Total Patients 52 170 191 132 57 602

0

20

40

60

80

100

0 6 12 18 24


Cum

ulat

ive

Surv

ival

(%)

Stage I (n=88)

Stage II (n=350

Stage III (n=299)

Stage IV (n=265)

Unstaged (n=124)


37

Rectal - Percentage of patients alive at various times after diagnosis by disease stage (1996 & 2001)

Rectum observed survival by stage (both years combined)

• There was a significant improvement in survival for Stage III patients (p<0.05) in 2001 compared to 1996.This may in part be due to a stage migration due to improved lymph node resection identifying a higherproportion of stage III patients.

0

20

40

60

80

100

0 6 12 18 24


Cum

ulat

ive

Surv

ival

(%)

Stage I (n=60)

Stage II (n=95)

Stage III (n=86)

Stage IV (n=88)

Unstaged (n=64)

Year Time Stage I Stage II Stage III Stage IV Unstaged All Patients1996 30 days 100% 95% 94% 91% 92% 95%

60 days 99% 94% 93% 81% 85% 91%6 months 96% 92% 88% 63% 66% 83%1 year 95% 85% 72% 42% 51% 69%2 years 95% 74% 56% 21% 48% 56%Total Patients 24 54 39 46 27 190

2001 30 days 100% 97% 97% 91% 91% 97%60 days 94% 92% 96% 79% 86% 91%6 months 88% 91% 93% 61% 66% 82%1 year 87% 86% 86% 54% 52% 75%2 years 83% 81% 81% 16% 36% 61%Total Patients 36 41 47 42 37 203

Cancer Services Audit 1996 & 2001Colorectal Summary

COLORECTAL CANCER SUMMARY

Presentation

• Over 80% of all diagnosed colorectal cancer cases in both years came from GP referrals with 60% arrivingvia outpatients.

• For all patients with colorectal cancer, the majority presented to a hospital within their own Board ofresidence. This pattern changed little between 1996 and 2001.

• 39% of colon and RS junction cancers and 16% of rectal cancers presented as emergencies.

Colon & RS junction

• 524 patients with cancer of the colon or rectosigmoid (RS) junction presented to 24 hospitals in 1996 and602 patients presented to 19 hospitals in 2001. Excluding emergencies the pattern was the same.

• By 2001, 60% of colon and RS junction patients presented to a Cancer Unit/Centre.

Rectum

• 190 patients with cancer of the rectum presented to 23 hospitals in 1996 and 203 patients presented to 22hospitals in 2001. Excluding emergencies the pattern was the same.

• Just over 50% of rectal cancer patients presented to a Cancer Unit/Centre in 2001.

Anus

• 11 patients with cancer of the anus presented to 9 hospitals in 1996 and 10 patients presented to 5hospitals in 2001.

• In 2001, 70% of patients with cancer of the anus presented to a Cancer Unit/Centre.

• All of the anal cancer patients presented to a hospital in their own Board of residence in both 1996 and2001.

Co-morbidity/Risk factors

• 9% of patients had a record of a chronic non malignant bowel disease.

• 11% of patients had a personal history of other malignancy (8% if non melanoma skin cancers are excluded).

• 13% of patients had a recorded family history of colorectal cancer.

Symptoms and Signs

• Over one third (37%) of colon cancer patients and 80% of rectal cancer patients had rectal bleeding.

• About one in eight (13%) of colon and RS junction cancer patients and 2% of rectal patients were recordedas presenting with obstructed/perforated bowel.

• The proportion of rectal cancer patients recorded as presenting with diarrhoea fell from 47% in 1996 to33% in 2001.

• Of those who had rectal bleeding, at least 21% of rectal patients and 25% of colon and RS junction patientshad this symptom for over 6 months. This was similar in both years.

• Of those who had altered bowel habit, at least 25% of rectal patients and 17% of colon and RS junctionpatients had this symptom for over 6 months. This was similar in both years.

38


39

Investigations

• By 2001, patients with colorectal cancer were more likely to have a colonoscopy (34% colon and RSjunction, 30% rectal) and/or a CT scan of the abdomen (36% colon and RS junction, 66% rectal).

• By 2001, use of Endorectal Ultrasound had increased for rectal cancer patients to 11%.

• In 1996 and 2001 patients 80 years and over with colon and RS Junction or rectal cancer had similarinvestigations to those 79 years and under (p>0.05).

Histopathology

• A high percentage of colorectal cancer included in this study had a histological diagnosis in both 1996 and2001 with the majority adenocarcinomas.

Staging and Nodal Involvement

• By 2001, recording of Dukes stage in clinical notes had increased to 77% for colon and RS junction (59%in 1996) and to 62% for rectal cancers (58% in 1996).

• By 2001, recording of TNM stage in the clinical notes had increased to 14% for colon and RS junction (1%in 1996) and 7% for rectal cancers (1% in 1996).

• 6% of all colorectal patients in 1996 and 8% in 2001 had neither TNM or Dukes stage recorded in thenotes.

• The increase in percentage of node positive cancers (Dukes C) reflects inproved lymph node resection.

• Using information available in the notes it was possible to assign a Dukes stage to about 90% of colon andRS junction cancers and 84% of rectal cancers in both years.

• The percentage of patients with cancer of the colon, RS junction and rectum for whom it was possible todetermine stage increased between 1996 and 2001 in all Boards (except EHSSB and WHSSB for rectumonly), with the most marked improvement evident for residents of the Northern Board.

• Staging in the Western Board for rectal cancers was the best for all Boards in both years.

• The percentage of colorectal resection patients with nodes examined increased (83% in 1996, 93% in2001).

Recording of Multidisciplinary Team Meetings

• Recording in the clinical notes that discussion at an MDM had taken place improved from less than 1% forall patients in 1996 to 18% for colon and RS junction and 31% for rectal patients in 2001.

• In 1996, a record of MDMs having taken place was found in the clinical notes from only two hospitals(Coleraine/Causeway and Daisy Hill). By 2001, this had improved with the notes from 9 additional hospitals(Altnagelvin, Antrim, Belfast City, Lagan Valley, Mater, Royal Victoria, Tyrone County, Ulster and Whiteabbeyhospitals) containing evidence of MDMs taking place.

• In one Cancer Unit, Craigavon, there was no evidence of multidisciplinary team meetings having taken placein either year.

Surgery

• In 1996, 463 surgical procedures for colon and RS junction cancer were carried out in 18 hospitals, while in2001, 546 operations were performed in 16 hospitals.

• In 1996, 164 surgical procedures for rectal cancer were carried out in 18 hospitals, while in 2001, 171operations were performed in 14 hospitals.


40

• Seven operations in 1996 and three in 2001 were carried out on patients with cancer of the anus.

• By 2001, 82% of colorectal cancer patients had a resection (87% colon & RS Junction and 74% rectalpatients). This was similar to 1996 (80%) but represented 93 more patients.

• There were 69% more stomas in 2001 than 1996 with 29% having a stoma as part of their treatment by2001 (19% in 1996).

• The number of open and close procedures increased for colon and RS Junction patients.

• Two thirds of colon and RS junction cancer patients had surgery alone in 2001.

Hospital of Surgery

• By 2001, 65% of colon and RS junction cancer surgery and 68% of rectal cancer surgery was performed inthe Cancer Centre or Cancer Units.

• 25% of all colorectal patients in 1996 and 13% in 2001 attended Belvoir Park Hospital (Northern IrelandRadiotherapy Centre).

• For residents of the Northern Board there was a shift in the main hospital of treatment from the RoyalVictoria to Antrim.

• For patients residing in the Eastern Board, fewer main hospitals performed surgery in 2001. The RoyalVictoria, Ulster and Lagan Valley hospitals all saw an increase in surgery by 2001 while levels of surgery forcolorectal cancer in Belfast City Hospital had decreased.

• For residents of the Southern Board there was a major shift from Belfast City Hospital to Craigavon Hospitalby 2001.

• The most marked evidence of service reorganisation within a Board was for rectal cancer operations in theWestern Board where there was a four fold increase in the number of procedures performed in Altnagelvinwith a reduction in operations performed in other Western Board hospitals.

Surgeon Workload

• By 2001, there was evidence of specialisation in colorectal cancer surgery especially for rectal patients with56% of colon & RS junction and 29% of rectal patients operated on by a surgeon undertaking at least 10of these procedures annually. By 2001, 20% of all colon and RS junction surgery was performed by 4Consultant surgeons who collectively performed one fifth of all operations carried out in that year. By 2001,one Consultant surgeon performed 13% of all rectal surgery.

• There was a reduction in the number of total operators for colorectal cancer (consultants, trainees andcareer grades) from 104 in 1996 to 90 in 2001. The number of consultant operators also fell from 77 in1996 to 65 in 2001. This excludes gastroenterologists who would have removed cancerous polyps duringcolonoscopy etc.

• There were 48 consultant operators who operated in both years, 29 who operated in 1996 only and 17 whooperated in 2001 only. There were 6 surgeons in training who operated in both years, 19 who operated in1996 only and 15 who operated in 2001 only.

• About 85% of procedures for patients with cancer of the colon and RS junction were carried out by 63Consultant surgeons in both years.

• Over 90% of procedures for patients with cancer of the rectum were carried out by 46 Consultant surgeonsin 1996 and 35 in 2001.

• By 2001, 25% of rectal and 10% of colon & RS junction procedures were being undertaken by operatorswho performed fewer than 5 operations, a significant improvement from 1996 (53% rectal, 16% colon &RS junction).


41

Centre Workload

• In 1996, more colorectal cancer operations were performed in the Royal Victoria Hospital than any otherhospital, while by 2001, more operations were carried out in the Ulster Hospital.

• The majority of patients with cancer of the colon and RS junction or rectum were operated on within theirown Board of residence in both years.

• All anal cancer patients who had surgery were operated on within their own Board of residence in both years.

Oncology

• Only 11% of patients in 1996 and 6% in 2001 did not have a record of having surgery, chemotherapy orradiotherapy.

• One quarter of colon and RS junction cancer patients had chemotherapy in both years.

• 33% of all rectal cancer patients had radiotherapy in 2001, showing a very small increase since 1996 (28%).

• There was a slight increase in the number of patients with rectal cancer who had a combination ofradiotherapy and surgery (10% vs 14%).

• Use of chemotherapy and/or radiotherapy for rectal and RS junction cancer patients increased by 2001.

Timelines

Colon and RS Junction patients

• Between 1996 and 2001, the percentage of patients seen within two weeks of referral was similar but thisrepresented more patients in 2001.

• The percentage of all patients having their diagnosis confirmed within two weeks of presentation to hospitaldecreased from 47% to 36% although the number of patients were similar. Excluding emergencies, morepatients had their diagnosis confirmed within two weeks of presentation.

• In 2001, the percentage of patients having surgery within 42 days from diagnosis remained steady at 97%in both years while a reduction in patients having surgery within two weeks of diagnosis likely reflectsincreased investigations and also use of neo-adjuvant treatment prior to surgery.

Rectal patients

• Between 1996 and 2001, the percentage of patients seen within two weeks of referral decreased from 58%to 41%. This may reflect the lower proportion presenting as emergencies.

• The percentage of patients having their diagnosis confirmed within two weeks of presentation to hospitalincreased from 49% to 54%.

• In 2001, the percentage of rectal cancer patients having surgery within 42 days from diagnosis decreasedfrom 96% in 1996 to 75% in 2001. This is likely to reflect increased use of newer diagnostic facilities andalso neo-adjuvant therapy.

Age and Investigations

• Timelines for patients under 60 years do not differ significantly from those for all patients for colon and RSjunction or rectal cancer patients.

• There was no difference in the numbers of colon and RS junction or rectal patients who receivedsigmoidoscopies within two weeks of referral in both years.


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• Despite a threefold increase in the number of patients having CT abdomen, more patients and a higherproportion (30%) of colon and RS Junction patients had a CT abdomen within two weeks of referral by2001.

Onward Referral

• The most dramatic recorded increase was in referral to Palliative care specialists (3% in 1996 to 46% in2001) reflecting increased availability of these services.

• Referrals to Hospices and Marie Curie nurses remained steady at around 3% and 2% respectively.

Communication

• Almost three quarters of patients in 2001 had a record of discussion of diagnosis and treatment plans in thenotes, an increase compared with 1996.

• By 2001, the number of patients referred to oncology increased to 59% (41% in 1996) and patientmanagement was more likely to be discussed with oncologists (50% in 1996 to 70% in 2001).

• The discussion of patient cases at multidisciplinary meetings greatly improved, yet by 2001, only about afifth of cases were recorded as having been discussed at these meetings.

• The recording of treatment plans also greatly improved, yet was available for only a third of patients.

• The provision of written information or recording of interviews was rarely recorded in notes.

• The number of patients entered into clinical trials fell between 1996 (11%) and 2001 (less than 1%). Thismay reflect availability of suitable clinical trials. While most hospitals participated in trials in 1996, incontrast, by 2001 there were only 5 hospitals where patients were entered into clinical trials (Royal Victoria,Belfast City, Causeway, Lagan Valley and Whiteabbey).

• Referral to a stoma therapist increased. 67% of patients in 1996 and 82% in 2001 who underwent a stomaformation were referred to a stoma therapist.

• Overall information to the GP greatly improved especially regarding the inclusion of information onprognosis which by 2001 was included in 83% of notes while 90% had a management plan.

• By 2001, only half of GP letters included information on whether the diagnosis had been discussed with thepatient.

Outcomes

• Survival from colorectal cancer was similar in both years with approximately 60% observed survival at twoyears.

• There was no significant difference in the overall observed survival of patients with cancer of the colon orRS junction in each year (p>0.05). The same was true for patients with cancer of the rectum (p>0.05).

• As expected survival for patients undergoing potentially curative resections was significantly better than nonresection patients, reflecting appropriate patient selection.

• There was no difference in survival between 1996 and 2001 for resection patients and non resectionpatients alike.

• Rectal cancer patients with resections appear to have improved survival in 2001 compared with 1996. Thishowever, did not reach statistical significance (p>0.05).

• As expected there was a highly significant difference in observed survival for stage at diagnosis (p<0.001),with earlier stage generally having better survival.


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CONCLUSION, KEY ISSUES & RECOMMENDATIONS

By 2001, the following improvements were apparent:

• Better initial and intra-operative staging for colorectal cancer.

• More patients were being operated on by surgeons with a workload of over 20 patients per year.

• Recording of MDM discussion, treatment plan, stage and discussion of diagnosis with the patient hadimproved, but further improvement is necessary in this area.

• Figures indicated that by 2001, the process of specialisation in colon cancer surgery had progressed slightly.

• Figures indicated that by 2001, there had been some specialisation of rectal cancer services.

Key Issues

• The high rate of emergency presentations poses challenges for service providers.

• There is a need to improve recording of stage related information.

• Discussion of patients and the recording of such at multidisciplinary team meetings needs to beimproved. This will need additional resources.

• While there was evidence of specialisation, further work in this area needs to be done.

• Fewer patients were entered into clinical trials.

• While referrals to stoma therapists improved, a fifth of stoma patients in 2001 had no such referral.

Recommendations

• Some patients had serious symptoms for over one year. This points to the need to raise awareness ofsymptoms among the population.

• The number of operators and hospitals treating colorectal cancer is too high. There needs to be morespecialisation.

• Retrospective note review is dependent on the completeness and accuracy of data in the notes. Efforts should be made to increase availability of data collected prospectively.


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REFERENCES

1. Campbell Report. ‘Cancer Services – Investing for the Future’. Department of Health and Social Services,1996.

2. Cancer Services – Investing for the Future – Cancer Working Group Sub-Group Reports. Department ofHealth and Social Services, 1996.

3. NHS Improving Outcomes. ‘Guidance on Commissioning Cancer Services – Improving Outcomes inColorectal Cancer – The Research Evidence’ . NHS Executive, 1997. Available at www.nice.org.uk/pdf/CSGCC_Research_evidence.pdf

4. Guidelines for the Management of Colorectal Cancer. Issued by the Association of Coloproctology ofGreat Britain and Ireland, 2001.

5. Cancer Research Campaign. CancerStats: Large Bowel – UK. November 1999.

6. Fernandez, E, Gallus, S, La Vecchia, C, Talamini, R, Negri, E, Franceschi, S. Family History andEnvironmental Risk Factors for Colon Cancer. Cancer Epidemiology Biomarkers & Prevention 2004; Vol 13:658–661.

7. Riboli, E et al. Meat, Fish and Colorectal Cancer Risk: The European Prospective Investigation into Cancerand Nutrition (EPIC). Journal of the National Cancer Institute 2005; Vol 97: No. 12, 906 – 916.

8. Bingham, S.A., Day, N.E., Luben, R., Ferrari, P., Slimani, N. et al. Dietary fibre in food and protection againstcolorectal cancer in the European Prospective Investigation into Cancer and Nutrition (EPIC): anobservational study. Lancet 2003; 361 (9368): 1487-8.

9. Hou, L., Ji, B.T., Blair, A., Dal, Q., Gao, Y.T. & Chav, W.H. Commuting physical activity and risk of coloncancer in Shanghai, China. American Journal of Epidemiology 2004; 160: 860-867.

10. Chlebowski, R.T., Wactawski - Wiende, T., Ritenbaugh, C., Hubbell, F.A., Ascensao, T., Rodabaugh, R.J.Estrogen plus progestin and Colorectal cancer in Post-menopausal women. The New England Journal ofMedicine 2004; 350: 10; 991-1004.

11. Peleg, I, Maibach, H.T, Brown, S.H et al. Aspirin and Non-steroidal Anti-inflammatory Drug use and theRisk of Subsequent Colorectal Cancer. Archives of International Medicine 1994; 154: 394-399.

12. Stryker, S.J, Wolff, B.G, Culp, C.E. Natural History of Untreated Colonic Polyps. Gastroenterology 1987;Nov 93 (5): 1009-13.

13. Fitzpatrick D, Gavin A, Middleton R, Catney D. ‘Cancer in Northern Ireland 1993-2001: A ComprehensiveReport’. N. Ireland Cancer Registry, Belfast, 2004. Available at www.qub.ac.uk/nicr

14. Thompson W.G, Heaton, K.W. Functional Bowel Disorders in Apparently Healthy People. Department ofMedicine, Bristol Royal Infirmary, University of Bristol, England and Ottawa Civic Hospital, University ofOttawa, Ottawa, Canada. Gastroenterology 1980; 79: 283-288.

15. Greene, F.L, Page, D.L, Fleming, I.D, Fritz, A.G, Balch, C.M, Haller, D.G, Morrow, M. AJCC Cancer StagingHandbook TNM Classification of Malignant Tumours. 6th Edition, New York: Springer-Verlag, 2002.

16. Voyer, T.E., Sigurdson, E.R., Hanlon, A.L., Mayer, R.J., Macdonald, P.J. & Haller, D.G. Colon Cancer Survivalis associated with increasing number of lymph nodes analyzed: A Secondary Survey of Intergroup Trial INT- 0089. Journal of Clinical Oncology 2003; Vol 21: No. 15: 2912-2919.

17. Brigham and Women’s Hospital webpage. The TME Procedure. Available at www.slp3d2.com/brw_1065/broadcast_post.cfm


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APPENDIX A

Campbell Report1: Recommendations regarding Cancer Services in Northern Ireland, 1996

1. The management of patients with cancer should be undertaken by appropriately trained, organ anddisease specific medical specialists.

2. All patients with cancer should be managed by multidisciplinary, multiprofessional specialist cancer teams.

3. A Cancer Forum should be established involving all key interests in the delivery of cancer services.

4. Cancer Units should, in conjunction with local GPs and other providers, develop an effectivecommunication strategy.

5. Northern Ireland should have one Cancer Centre, which in addition to its regional role, should act as aCancer Unit to its local catchment population of around half a million.

6. There should be four other Cancer Units, one in each Board area, each serving a population of around aquarter of a million.

7. Radiotherapy services, together with chemotherapy services, should be moved as soon as possible to theBelfast City Hospital and become an integral part of the regional Cancer Centre.

8. Each Cancer Unit should develop a chemotherapy service. This service should be staffed by designated specialist nurses and pharmacists, and should be overseen by the non-surgical oncologist attached to the unit, with back-up from a haematologist.

9. There should be a minimum target of 13 consultants in non-surgical oncology for Northern Ireland by2005.

10. Any new appointments of trained cancer specialists should be to Cancer Units or to the Cancer Centre.

11. Guidelines should be drawn up and agreed for the appropriate investigation and management of patientspresenting to non-Cancer Unit hospitals, who turn out to have cancer.

12. The Cancer Centre and Cancer Units should each develop a specialist multiprofessional palliative careteam.

13. There should be a comprehensive review of palliative care services in Northern Ireland.

14. The Northern Ireland Cancer Registry should be adequately resourced.

The above recommendations outlined the change that was necessary to improve cancer care.


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APPENDIX B

NHS Improving Outcomes in Colorectal Cancer3, 1997. (Summary recommendations in specific topic areas).

1. Patient-centred Care• At every stage, patients and their carers should be offered prompt, full and clear information about their

condition and about any treatment that may be offered in both verbal and written forms. Informationgiven to family members should not be withheld from the patient.

• From the time of diagnosis, each patient should have access to a named nurse or other member of thecore team who can provide guidance, information and support, and to offer continuity of care.

2. Access to appropriate services• Older patients with symptoms that can be caused by colorectal cancer, should receive prompt and

thorough evaluation.• Rectal bleeding of recent onset in people over the age of 50 should not be attributed to haemorrhoids

without first excluding colorectal cancer.

3. Multidisciplinary Team• Patients with colorectal cancer should be managed by a coordinated team whose members have particular

interest and expertise in this area.• The team, operating over one or more hospitals, should include clinicians with specialised knowledge of

each aspect of diagnosis and treatment and specialised nursing staff who support, advise and assistpatients, and provide information.

4. Primary Diagnosis and Preoperative Evaluation• Initial investigation of patients in whom colorectal cancer is suspected should involve either colonoscopy

alone or flexible sigmoidoscopy followed by double contrast barium enema.• If colorectal cancer is diagnosed, patients should have further investigations including an ultrasound or

CT/MRI scan, unless the findings are unlikely to influence management.

5. Surgery and Histopathology• Surgery should be undertaken by surgeons who can demonstrate skill in removing the tumour intact and

minimise the risk that cancer cells are left at the site of origin.• The histopathologist should complete a minimum data set including the size, stage, type, grade and

appearance of the tumour, depth of invasion, number of lymph nodes excised and number affected, andthe tumour involvement at all surgical margins, including the circumferential plane in rectal cancer.

• Surgeons should aim to conserve the anal sphincter whenever possible.

6. Radiotherapy in Primary Diagnosis• Radiotherapy should be available for patients with rectal cancer.• Preoperative radiotherapy, usually over a period of one week, should be used, unless the operating

surgeon can demonstrate low baseline local recurrence rates (<1%).

7. Adjuvant Chemotherapy• Chemotherapy should be considered for patients with Dukes Stage C cancer who are fit enough to tolerate it.• Patients receiving chemotherapy should have access to emergency care and both patients and GPs should

have access to information and advice from oncology trained staff on a 24 hour basis. They should begiven written information on how to deal with side-effects of chemotherapy.


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8. Follow Up• Patients and their GPs should be given full information on symptoms which might signify cancer

recurrence.• Patients should be reassured that the risk of recurrence declines rapidly after the first two years after

treatment, so that by year 5, recurrence is very unlikely.

9. Recurrent and Advanced Disease• Treatment options for recurrent and advanced colorectal cancer should be clearly explained to patients.

They should be given realistic information both about potential effectiveness and adverse effects andshould be actively involved in decisions about treatment options, if they so wish.

• The use of chemotherapy – usually based on 5-fluorouracil and folinic acid (5FU) should be discussed withpatients when a diagnosis of recurrent or advanced colorectal cancer is confirmed.

• Radiotherapy should be discussed with patients with locally recurrent/advanced rectal cancer who have notpreviously undergone radiotherapy. It should also be offered to patients with bone metastases.

10. Palliative Care• A palliative approach which involves both symptom control and attention to the social and psychological

wellbeing of patients and their carers should be provided throughout the course of the illness.• The role of the palliative care specialist will primarily be to provide information, education and advice for

other health professionals.• Clear mechanisms should exist for referral to and communication between primary care, community and

hospital services involved in the delivery of general and specialist palliative care.


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APPENDIX CGuidelines for the Management of Colorectal Cancer4, 2001 – Issued by the Association ofColoprotology of Great Britain and Ireland (Summary of guidelines)

1. Investigation• Fast-tracking of patients with high risk symptoms with either flexible or rigid sigmoidoscopy plus a high

quality double contrast barium enema or colonoscopy, when appropriate.• Preoperative histology should be obtained from all rectal tumours.• First degree relatives of patients who develop colorectal cancer before the age of 45 years and members

of families in which multiple cancers have occurred should be seen by a specialist, preferably withexperience in genetic counselling.

2. Access to Treatment• Initial treatment within four weeks of diagnosis.• Treatment by surgeons with appropriate training and experience and who work as part of a

multidisciplinary team.

3. Preparation for Surgery• The patient who may require a stoma should be seen by a stoma nurse prior to surgery and the referral

should be made at the earliest opportunity to allow adequate time for preparation.• Mechanical bowel preparation and antibiotic prophylaxis are recommended.

4. Elective Surgical Treatment• Surgeons should expect to achieve an overall curative resection rate of at least 60%.• Any cancer whose distal margin is seen at 15cm or less from the anal verge using a rigid sigmoidoscope

should be classified as rectal.• Total mesorectal excision should be performed for cancer in the lower two thirds of the rectum, either as

part of a low anterior resection or an abdomino-perineal resection (APER). • Cytocidal washout of the rectal stump should be undertaken prior to anastomosis.• The proportion of rectal cancers treated by abdomino-perineal excision of the rectum (APER) should be less

than 40%, and, if distal clearance of 1cm can be achieved, a low rectal cancer may be suitable for anteriorresection. If a surgeon has any doubt regarding the choice between these two operations, an experiencedsecond opinion should be sought.

• Laparoscopic surgery for colorectal cancer should only be performed by experienced laparoscopic surgeonswho have been properly trained in colorectal surgery and who are entering their patients into one of thenational trials.

5. Record Keeping• All patients with colorectal cancer should be brought to the attention of the Colorectal Multidisciplinary

Team. Records of these meetings, the cases discussed and the outcomes agreed must be recorded.

6. Emergency Treatment• Emergency surgery should be carried out during daytime hours as far as possible, by experienced surgeons

and anaesthetists.

7. Adjuvant Therapy• Patients with Dukes C colon cancer should be considered for adjuvant chemotherapy.• Patients with Dukes B colon cancer should be considered for entry into randomised trials of adjuvant

chemotherapy.


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• Patients with high risk Dukes B colon cancer should be individually counselled about their level of risk andpossible benefits of chemotherapy.

• There is no evidence to support the use of adjuvant chemotherapy in Dukes A cancers of the colon or rectum.• In patients with rectal cancer, pre-operative radiotherapy using short course (25 Cy in 5 fractions in one

week) or longer course (40-45 Cy in 20-25 fractions over 4-5 weeks) are both acceptable.• In patients with rectal cancer who have not had pre-operative radiotherapy, post-operative radiotherapy

and chemotherapy should be offered to patients with well established predictors of risk.• Patients with potentially operable rectal cancer should always be considered for entry into trials of adjuvant

radiotherapy.

8. Treatment of Advanced Disease• For patients with inoperable rectal carcinoma without evidence of metastastic disease, primary

radiotherapy alone or in combination with chemotherapy should be considered.• Patients with metastastic disease who are fit for active therapy should be accurately staged with CT scans

of abdomen and thorax.• Patients with evidence of unresectable metastastic disease should be referred to an oncologist for

consideration of palliative chemotherapy as soon as the diagnosis of metastastic disease is made, but thismay not be appropriate for elderly patients.

• Palliative treatment should be 5FU given by infusion, combined with the use of irinotecan in the firstinstance or on 5FU failure, if the patient remains fit for chemotherapy.

• Hepatic arterial infusional chemotherapy remains of unproven benefit.

9. Outcome• An operative mortality of not more than 15-25% for emergency surgery and not more than 4-7% for

elective surgery with colorectal cancer should be achieved.• Intensive care and high dependency care are an essential part of peri-operative colorectal cancer care and

should be available in hospitals undertaking colorectal cancer surgery.• Wound infection rates after surgery for colorectal cancer should be not greater than around 10%.• Local recurrence rates after curative resection for rectal cancers should be not greater than around 10%

within two years of follow up.

10. Follow Up• Although there is no evidence that intensive follow up for the detection of recurrent disease improves

survival, it is reasonable to offer liver imaging to asymptomatic patients during the first two postoperativeyears for the purpose of detecting operable liver metastases.

11 Histopathology• All resected polyps and cancers should be submitted for histopathological examination.• Pathology laboratories should store stained histology slides for a minimum of 10 years, and tissue blocks

from specimens indefinitely, in order to facilitate future case review, clinical audit, and research.


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APPENDIX D

Staging of Colorectal Cancer Accurate staging is essential for the planning of appropriate treatment and for the comparison of the outcomesof such treatment (surgical and non-surgical).

Clinical stagingThis involves physical examination, endoscopic examination (sigmoidoscopy/colonoscopy) and imaging usingbarium enema and endorectal MRI (rectal tumours only). Additional investigations to detect metastatic diseaseinclude chest X-ray, CT scanning and newer imaging techniques such as PET scanning.

Pathological stagingPathological staging adds significant information to this process. It is only possible following surgicalexploration of the abdomen and pathological examination of the surgically resected specimen. This will includethe section of bowel containing the tumour with its lymph node-bearing mesentery. This gives more exactinformation on the depth of the tumour invasion in the intestinal wall (T) and detects the presence of metastatictumour within the examined lymph nodes (N). It may also provide histological evidence of distant metastases(M) by sampling suspect areas in the liver (see Table 1).

The Dukes classification system, which places patients into one of three categories (Stages A, B, C) was firstintroduced in 1932 and was subsequently modified by Astler-Coller to include a fourth stage (Stage D). DukesA and B tumours are confined to the bowel wall, while Dukes C tumours have metastasized to the regionallymph nodes and Dukes D tumours have spread to distant sites. More recently, the American Joint Committeeon Cancer (AJCC) and UICC (International Union Against Cancer) have introduced the TNM staging system,which places patients into one of four stages (Stage I-IV). The TNM classification provides more detail and moreprecision in identifying prognostic groups than the Dukes staging system. Both systems are shown in Table 2.



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Table 1 TNM classification of colorectal cancer13

TumourT0 no evidence of primary tumourT1 tumour invades submucosaT2 tumour invades muscularis propriaT3 tumour invades through the muscularis propria into the subserosa, or into

the non-peritonealized pericolic or perirectal tissueT4 tumour directly invades other organs or structures, and/or perforates

visceral peritoneum (serosa)T4a* tumour directly invades other organs or structures without

perforating the visceral peritoneumT4b* tumour directly invades other organs or structures with perforation

of the visceral peritoneum

*Optional subdivision

NodesNX regional nodes not assessedN0 no regional lymph node metastasesN1 metastases in 1 to 3 regional nodesN2 metastases in 4 or more regional nodes

MetastasesMX distant metastases cannot be assessedM0 no distant metastasesM1 distant metastases

In order to facilitate survival analysis the assigned TNM profile is condensed into a stage group category ofwhich there are 7 ( I, IIA, IIB, IIIA, IIIB, IIIC and IV, see Table 2).

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Table 2 Stage Group Colorectal Cancer

Stage T N M Dukes

I T1 N0 M0 A

T2 N0 M0 A

IIA T3 N0 M0 B

IIB T4 N0 M0 B

IIIA T1-T2 N1 M0 C

IIIB T3-T4 N1 M0 C

IIIC any T N2 M0 C

IV any T any N M1 D*

* Modified Dukes

Example:

• Examination of the resected tumour shows penetration into but not beyond the muscle layer of the boweltherefore T = T2

• Regional nodes sampled and are negative for metastases, therefore N = N0.

• Clinically/radiologically there is no evidence of distant metastases and is therefore M = M0.

TNM profile is pT2 pN0 cM0 (p = determined pathologically, c = clinically determined).This TNM profile is assigned to stage group I or Dukes A.


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